Analysis of drug content and weight uniformity for half-tablets of 6 commonly split medications.

PubMed

Hill, Shaynan W; Varker, Andrew S; Karlage, Kelly; Myrdal, Paul B

2009-04-01

Cost savings can be achieved with the practice of tablet splitting. Previous research has shown weight nonuniformity within tablet halves. However, limited research to date has found that the potential dose inaccuracy resulting from splitting tablets does not significantly affect clinical outcomes. To determine the drug content and weight in split half-tablets of 6 commonly split medications using drug assay analysis. This study was performed by 2 fourth-year pharmacy students using 30 randomly selected tablets of each of the following 6 medications: warfarin sodium 5 milligrams (mg), simvastatin 80 mg, metoprolol succinate 200 mg, metoprolol tartrate 25 mg, citalopram 40 mg, and lisinopril 40 mg. A randomly selected half of the tablets were split by a single pharmacy student using a tablet cutter, and the remaining tablets were kept whole. Drug content was analyzed for 15 whole tablets and 30 half-tablets for each of the 6 drugs using high performance liquid chromatography, an analytical tool used to identify and quantify substances in solution. Drug content uniformity was assessed by comparing drug content within half-tablets with one-half of the drug content mean found for all whole tablets in the sample. Weight uniformity was assessed by comparing half-tablet weights, as determined by a Mettler analytical balance, with one-half of the mean weight for whole tablets in the sample. The percentages by which each whole tablet's or half-tablet's drug content and weight differed from sample mean values were compared with proxy United States Pharmacopeia (USP) specification ranges for drug content (95%-105% for warfarin sodium and 90%-110% for the other 5 drugs). Additionally, these outcomes were compared for nonscored versus scored tablets. The percent relative standard deviation (%RSD, ratio of the standard deviation to the mean), a commonly used measure of the repeatability and precision of assays used to analyze drug content, was also calculated in order to determine whether the drugs met proxy USP specification for %RSD (less than 6% for all drugs studied). A total of 43 of 180 half-tablets (23.9%) differed from sample mean values by a percentage that fell outside of proxy USP specification for drug content; warfarin sodium (11 of 30 half-tablets, 36.7%), simvastatin (3 of 30 half-tablets, 10.0%) metoprolol succinate (10 of 30 half-tablets, 33.3%), metoprolol tartrate (4 of 30 half-tablets, 13.3%), citalopram (5 of 30 half-tablets, 16.7%), and lisinopril (10 of 30 half-tablets, 33.3%). Half-tablets outside of proxy USP specification for weight included warfarin sodium (10 of 30 half-tablets, 33.3%), metoprolol succinate (6 of 30 half-tablets, 20%), and lisinopril (7 of 30 half-tablets, 23.3%). The %RSDs for drug content and weight fell outside of the proxy USP specification for %RSD for metoprolol succinate (drug content = 8.98%, weight = 7.70%) and lisinopril (drug content = 10.41%, weight = 8.13%). Mean percent weight loss after splitting was less than 1% for all drugs except lisinopril, which had an average weight loss of 1.25%. The total numbers of scored (nonscored) tablet halves that fell outside of proxy USP specification were 20 (23) for drug content and 10 (13) for weight. When measuring drug content, the numbers of out-of-range half-tablets for scored (nonscored) drugs were 36 (44) at 95%-105%, 9 (23) at 90%-110%, 0 (10) at 85%-115%, and 0 (1) at 75%-125%. When measuring weight, the numbers of out-of-range half-tablets for scored (nonscored) drugs were 28 (38) at 95%-105%, 0 (14) at 90%-110%, 0 (3) at 85%-115%, and 0 (0) at 75%-125%. Dose variation exceeded a proxy USP specification for more than one-third of sampled half-tablets of warfarin sodium, metoprolol succinate, and lisinopril and appeared to be greater for nonscored tablets as compared with scored tablets. Drug content variation in half-tablets appeared to be attributable primarily to weight variation occurring when tablets powder or fragment during the splitting process. Therefore, equal daily doses will be determined by the ability of patients to split tablets perfectly in half.

Does the subjective quality of life of children with specific learning disabilities (SpLD) agree with their parents' proxy reports?

PubMed

Rotsika, V; Coccossis, M; Vlassopoulos, M; Papaeleftheriou, E; Sakellariou, K; Anagnostopoulos, D C; Kokkevi, A; Skevington, S

2011-10-01

The aim of the present study was to investigate agreement between child-parent proxy reports on quality of life (QoL) in children with specific learning disabilities (SpLD) and in a control group of typically developing children. One hundred and sixteen children aged 8-14 years with SpLD, and 312 same age typically developing children with their parents (one or both), respectively, completed the child and parent versions of the KINDL(R) questionnaire. Values were analyzed with ANOVA and intra-class correlation coefficient (ICC). Significant mean differences were found between children with SpLD and their mother's proxy ratings. So, mothers reported significantly lower scores in the dimension of everyday functioning in school, but significantly higher scores regarding the child's physical and emotional well-being. For typically developing children, significant differences between children and parents' proxy ratings were found in physical well-being and self-esteem with both parents reporting higher scores. Concerning ICC, correlations were few and low in the SpLD group but more robust in the typically developing child-parent proxy ratings with values ranging from 0.22 to 0.46. In the case of SpLD, the child's problem area, which is reflected in the KINDL(R) dimension of everyday functioning in school, seems to be an issue of controversial value that may be differentially perceived by children and their mothers. Further, it can be argued that as mothers seemed to perceive in a more negative way the child's QoL at school, they were at the same time attempting to counterbalance their reactions by overestimating the child's physical and emotional well-being. Besides differences, there is a tendency even low for mothers and children with SpLD to converge toward similar perceptions regarding the child's physical and emotional well-being and satisfaction with friends that is showing some rather common understanding of the child's overall well-being and his/her relationships with peers. In the control group, agreement between children and parents seems to be more even and evident. Proxy assessments in children with SpLD and their parents may be useful for planning targeted support interventions for these families.

HABIT, a Randomized Feasibility Trial to Increase Hydroxyurea Adherence, Suggests Improved Health-Related Quality of Life in Youths with Sickle Cell Disease.

PubMed

Smaldone, Arlene; Findley, Sally; Manwani, Deepa; Jia, Haomiao; Green, Nancy S

2018-06-01

To examine the effect of a community health worker (CHW) intervention, augmented by tailored text messages, on adherence to hydroxyurea therapy in youths with sickle cell disease, as well as on generic and disease-specific health-related quality of life (HrQL) and youth-parent self-management responsibility concordance. We conducted a 2-site randomized controlled feasibility study (Hydroxyurea Adherence for Personal Best in Sickle Cell Treatment [HABIT]) with 2:1 intervention allocation. Youths and parents participated as dyads. Intervention dyads received CHW visits and text message reminders. Data were analyzed using descriptive statistics, the Wilcoxon signed-rank test, and growth models adjusting for group assignment, time, and multiple comparisons. Changes in outcomes from 0 to 6 months were compared with their respective minimal clinically important differences. A total of 28 dyads (mean age of youths, 14.3 ± 2.6 years; 50% Hispanic) participated (18 in the intervention group, 10 in the control group), with 10.7% attrition. Accounting for group assignment, time, and multiple comparisons, at 6 months intervention youths reported improved generic HrQL total score (9.8 points; 95% CI, 0.4-19.2) and Emotions subscale score (15.0 points; 95% CI, 1.6-28.4); improved disease-specific subscale scores for Worry I (30.0 points; 95% CI, 8.5-51.5), Emotions (37.0 points, 95% CI, 9.4-64.5), and Communication I (17.8 points; 95% CI, 0.5-35.1); and 3-month dyad self-management responsibility concordance (3.5 points; 95% CI, -0.2 to 7.1). There were no differences in parent proxy-reported HrQL measures at 6 months. These findings add to research examining effects of behavioral interventions on HrQL outcomes in youths with sickle cell disease. ClinicalTrials.gov: NCT02029742. Copyright © 2018 Elsevier Inc. All rights reserved.

[Severity assessment strategies based on administrative data using stroke as an example].

PubMed

Schubert, Ingrid; Hammer, Antje; Köster, Ingrid

2017-10-01

Information on disease severity is relevant for many studies with claims data in health service research, but only limited information is available in routine data. Stroke serves as an example to analyse whether the combination of different information in claims data can provide insight into the severity of a disease. As a first step, a literature search was conducted. Strategies to assess the severity of a disease by means of routine data were examined with regard to approval and applicability to German sickness fund data. In order to apply and extend the identified procedures, the statutory health insurance sample AOK Hessen/KV Hessen (VSH) served as data source. It is an 18.75 % random sample of persons insured by the AOK Hessen, with 2013 being the most recent year. Stroke patients were identified by the ICD-10 GM code I63 and I64. Patients with said diagnoses being coded as a hospital discharge diagnosis in 2012 were included due to an acute event in 2012 (n=944). The follow-up time was one year. Ten studies covering seven different methods to assess stroke severity were identified. Codes for coma (4.2 % of stroke patients in the SHI sample) as well as coma and/or the application of a PEG tube (9.8 % of the stroke patients) were applied as a proxy for disease severity of acute cases. Taking age, sex and comorbidity into consideration, patients in a coma show a significantly increased risk of mortality compared to those without coma. Three operationalisations were chosen as possible proxies for disease severity of stroke in the further course of disease: i) sequelae (hemiplegia, neurological neglect), ii) duration of the index inpatient stay, and iii) nursing care/ care level 3 for the first time after stroke. The latter proxy has the highest explanatory value for SHI costs. The studies identified use many variables mainly based on hospital information in order to describe disease severity. With the exception of coma, these proxies were neither validated nor did the authors provide more detailed grounds for their use. An identified score for stroke severity could not be applied to SHI data. To develop a comparable score requires a linkage of clinical and administrative data. Since routine data include information from all sectors of care, it should be explored whether these data (for example, the patients' care needs) are suitable to assess disease severity. For validation, separate databases and, optimally, primary patient data are necessary. Copyright © 2017. Published by Elsevier GmbH.

Quality of life of Malaysian children with CHD.

PubMed

Ong, Lai C; Teh, Ching S; Darshinee, Joyce; Omar, Asma; Ang, Hak L

2017-09-01

The objectives of this study were to compare the quality-of-life scores of Malaysian children with CHD and their healthy siblings, to determine the level of agreement between proxy-reports and child self-reports, and to examine variables that have an impact on quality of life in those with CHD. Parental-proxy scores of the Pediatric Quality of Life Inventory 4.0 core scales were obtained for 179 children with CHD and 172 siblings. Intra-class coefficients were derived to determine the levels of proxy-child agreement in 66 children aged 8-18 years. Multiple regression analysis was used to determine factors that impacted Pediatric Quality of Life Inventory scores. Proxy scores were lower in children with CHD than siblings for all scales except physical health. Maximum differences were noted in children aged 5-7 years, whereas there were no significant differences in the 2-4 and 13-18 years age groups. Good levels of proxy-child agreement were found in children aged 8-12 years for total, psychosocial health, social, and school functioning scales (correlation coefficients 0.7-0.8). In children aged 13-18 years, the level of agreement was poor to fair for emotional and social functioning. The need for future surgery and severity of symptoms were associated with lower scores. Differences in proxy perception of quality of life appear to be age related. The level of proxy-child agreement was higher compared with other reported studies, with lower levels of agreement in teenagers. Facilitating access to surgery and optimising control of symptoms may improve quality of life in this group of children.

Eleven Years of Data on the Jefferson Scale of Empathy-Medical Student Version (JSE-S): Proxy Norm Data and Tentative Cutoff Scores.

PubMed

Hojat, Mohammadreza; Gonnella, Joseph S

2015-01-01

This study was designed to provide typical descriptive statistics, score distributions and percentile ranks of the Jefferson Scale of Empathy-Medical Student version (JSE-S) of male and female medical school matriculants to serve as proxy norm data and tentative cutoff scores. The participants were 2,637 students (1,336 women and 1,301 men) who matriculated at Sidney Kimmel (formerly Jefferson) Medical College between 2002 and 2012, and completed the JSE at the beginning of medical school. Information extracted from descriptive statistics, score distributions and percentile ranks for male and female matriculants were used to develop proxy norm data and tentative cutoff scores. The score distributions of the JSE tended to be moderately skewed and platykurtic. Women obtained a significantly higher mean score (116.2 ± 9.7) than men (112.3 ± 10.8) on the JSE-S (t2,635 = 9.9, p < 0.01). It was suggested that percentile ranks can be used as proxy norm data. The tentative cutoff score to identify low scorers was ≤ 95 for men and ≤ 100 for women. Our findings provide norm data and cutoff scores for admission decisions under certain conditions and for identifying students in need of enhancing their empathy. © 2015 S. Karger AG, Basel.

Skin autofluorescence as proxy of tissue AGE accumulation is dissociated from SCORE cardiovascular risk score, and remains so after 3 years.

PubMed

Tiessen, Ans H; Jager, Willemein; ter Bogt, Nancy C W; Beltman, Frank W; van der Meer, Klaas; Broer, Jan; Smit, Andries J

2014-01-01

Skin autofluorescence (SAF), as a proxy of AGE accumulation, is predictive of cardiovascular (CVD) complications in i.a. type 2 diabetes mellitus and renal failure, independently of most conventional CVD risk factors. The present exploratory substudy of the Groningen Overweight and Lifestyle (GOAL)-project addresses whether SAF is related to Systematic COronary Risk Evaluation (SCORE) risk estimation (% 10-year CVD-mortality risk) in overweight/obese persons in primary care, without diabetes/renal disease, and if after 3-year treatment of risk factors (change in, Δ) SAF is related to ΔSCORE. In a sample of 65 participants from the GOAL study, with a body mass index (BMI) >25-40 kg/m2, hypertension and/or dyslipidemia, but without diabetes/renal disease, SAF and CVD risk factors were measured at baseline, and after 3 years of lifestyle and pharmaceutical treatment. At baseline, the mean SCORE risk estimation was 3.1±2.6%, mean SAF 2.04±0.5AU. In multivariate analysis SAF was strongly related to age, but not to other risk factors/SCORE. After 3 years ΔSAF was 0.34±0.45 AU (p<0.001). ΔSAF was negatively related to Δbodyweight but not to ΔSCORE%, or its components. At follow-up, SAF was higher in 11 patients with a history of CVD compared to 54 persons without CVD (p=0.002). Baseline and 3-year-Δ SAF are not related to (Δ)SCORE, or its components, except age, in the studied population. ΔSAF was negatively related to Δweight. As 3-year SAF was higher in persons with CVD, these results support a larger study on SAF to assess its contribution to conventional risk factors/SCORE in predicting CVD in overweight persons with low-intermediate cardiovascular risk.

A cross-cultural study on perceived health-related quality of life in children and adolescents with type 1 diabetes mellitus.

PubMed

Kalyva, Efrosini; Abdul-Rasoul, Majedah; Kehl, Dániel; Barkai, László; Lukács, Andrea

2016-04-01

This study investigated whether culture can affect self- and proxy-reports of perceived diabetes-specific health-related quality of life of children and adolescents with type 1 diabetes when taking into account glycemic control, gender and age. A total of 416 patients aged between 8 and 18 years--84 (Greece), 135 (Hungary) and 197 (Kuwait)--and their parents completed the Pediatric Quality of Life Inventory 3.0. Diabetes Module. Gender and age did not have any effect on perceived diabetes-specific health-related quality of life. Significant differences were detected among countries in self- and proxy-reports of diabetes-specific health-related quality of life when controlling for glycemic control. More specifically, Greek patients with type 1 diabetes and their parents reported significantly worse disease-specific health-related quality of life than their peers from Kuwait and Hungary. Moreover, culture affected the level of agreement between self- and proxy-reports with parents from Kuwait underestimating their children's diabetes-specific health-related quality of life. The impact of culture on self- and proxy-reports of diabetes-specific health-related quality of life warrants further investigation, since it might suggest the need for differential psychosocial treatment. Copyright © 2016 Elsevier Inc. All rights reserved.

Validation and application of a death proxy in adult cancer patients.

PubMed

Mealing, Nicole M; Dobbins, Timothy A; Pearson, Sallie-Anne

2012-07-01

PURPOSE: Fact of death is not always available on data sets used for pharmacoepidemiological research. Proxies may be an appropriate substitute in the absence of death data. The purposes of this study were to validate a proxy for death in adult cancer patients and to assess its performance when estimating survival in two cohorts of cancer patients. METHODS: We evaluated 30-, 60-, 90- and 180-day proxies overall and by cancer type using data from 12 394 Australian veterans with lung, colorectal, breast or prostate cancer. The proxy indicated death if the difference between the last dispensing record and the end of the observational period exceeded the proxy cutoff. We then compared actual survival to 90-day proxy estimates in a subset of 4090 veterans with 'full entitlements' for pharmaceutical items and in 3704 Australian women receiving trastuzumab for HER2+ metastatic breast cancer. RESULTS: The 90-day proxy was optimal with an overall sensitivity of 99.3% (95%CI: 98.4-99.7) and a specificity of 97.6% (95%CI: 91.8-99.4). These measures remained high when evaluated by cancer type and spread of disease. The application of the proxy using the most conservative date of death estimate (date of last dispensing) generally underestimated survival, with estimates up to 3 months shorter than survival based on fact of death. CONCLUSIONS: A 90-day death proxy is a robust substitute to identify death in a chronic population when fact of death is not available. The proxy is likely to be valid across a range of chronic diseases as it relies on the presence of 'regular' dispensing records for individual patients. Copyright © 2011 John Wiley & Sons, Ltd. Copyright © 2011 John Wiley & Sons, Ltd.

Proxy rated quality of life of care home residents with dementia: a systematic review.

PubMed

Robertson, Sarah; Cooper, Claudia; Hoe, Juanita; Hamilton, Olivia; Stringer, Aisling; Livingston, Gill

2017-04-01

Quality of life (QoL) is an important outcome for people with dementia living in care homes but usually needs to be rated by a proxy. We do not know if relative or paid carer proxy reports differ. We conducted the first systematic review and meta-analysis of data investigating whether and how these proxy reports of QoL differ. We searched four databases: Medline, Embase, PsychInfo, and CINAHL in October 2015 with the terms: dementia, QoL, proxy, and care home. Included studies either compared proxy QoL ratings or investigated the factors associated with them. We meta-analyzed data comparing staff and family proxy rated QoL. We included 17/105 papers identified. We found no difference between global proxy ratings of QoL (n = 1,290; pooled effect size 0.06 (95% CI = -0.08 to 0.19)). Studies investigating factors associated with ratings (n = 3,537) found family and staff ratings correlated with the resident's physical and mental health. Staff who were more distressed rated resident QoL lower. Relatives rated it lower when the resident had lived in the care home for longer, when they observed more restraint, or contributed more to fees. Relatives and staff proxy QoL ratings share a clear relationship to resident health and overall ratings were similar. Rater-specific factors were, however, also associated with scores. Understanding why different raters consider the QoL of the same person differently is an important consideration when evaluating the meaning of proxy rated QoL. Proxy raters' backgrounds may affect their rating of QoL.

Eleven Years of Data on the Jefferson Scale of Empathy-Medical Student Version (JSE-S): Proxy Norm Data and Tentative Cutoff Scores

PubMed Central

Hojat, Mohammadreza; Gonnella, Joseph S.

2015-01-01

Objective This study was designed to provide typical descriptive statistics, score distributions and percentile ranks of the Jefferson Scale of Empathy-Medical Student version (JSE-S) of male and female medical school matriculants to serve as proxy norm data and tentative cutoff scores. Subjects and Methods The participants were 2,637 students (1,336 women and 1,301 men) who matriculated at Sidney Kimmel (formerly Jefferson) Medical College between 2002 and 2012, and completed the JSE at the beginning of medical school. Information extracted from descriptive statistics, score distributions and percentile ranks for male and female matriculants were used to develop proxy norm data and tentative cutoff scores. Results The score distributions of the JSE tended to be moderately skewed and platykurtic. Women obtained a significantly higher mean score (116.2 ± 9.7) than men (112.3 ± 10.8) on the JSE-S (t2,635 = 9.9, p < 0.01). It was suggested that percentile ranks can be used as proxy norm data. The tentative cutoff score to identify low scorers was ≤95 for men and ≤100 for women. Conclusions Our findings provide norm data and cutoff scores for admission decisions under certain conditions and for identifying students in need of enhancing their empathy. PMID:25924560

Genetic Markers of Human Evolution Are Enriched in Schizophrenia.

PubMed

Srinivasan, Saurabh; Bettella, Francesco; Mattingsdal, Morten; Wang, Yunpeng; Witoelar, Aree; Schork, Andrew J; Thompson, Wesley K; Zuber, Verena; Winsvold, Bendik S; Zwart, John-Anker; Collier, David A; Desikan, Rahul S; Melle, Ingrid; Werge, Thomas; Dale, Anders M; Djurovic, Srdjan; Andreassen, Ole A

2016-08-15

Why schizophrenia has accompanied humans throughout our history despite its negative effect on fitness remains an evolutionary enigma. It is proposed that schizophrenia is a by-product of the complex evolution of the human brain and a compromise for humans' language, creative thinking, and cognitive abilities. We analyzed recent large genome-wide association studies of schizophrenia and a range of other human phenotypes (anthropometric measures, cardiovascular disease risk factors, immune-mediated diseases) using a statistical framework that draws on polygenic architecture and ancillary information on genetic variants. We used information from the evolutionary proxy measure called the Neanderthal selective sweep (NSS) score. Gene loci associated with schizophrenia are significantly (p = 7.30 × 10(-9)) more prevalent in genomic regions that are likely to have undergone recent positive selection in humans (i.e., with a low NSS score). Variants in brain-related genes with a low NSS score confer significantly higher susceptibility than variants in other brain-related genes. The enrichment is strongest for schizophrenia, but we cannot rule out enrichment for other phenotypes. The false discovery rate conditional on the evolutionary proxy points to 27 candidate schizophrenia susceptibility loci, 12 of which are associated with schizophrenia and other psychiatric disorders or linked to brain development. Our results suggest that there is a polygenic overlap between schizophrenia and NSS score, a marker of human evolution, which is in line with the hypothesis that the persistence of schizophrenia is related to the evolutionary process of becoming human. Copyright © 2016 Society of Biological Psychiatry. Published by Elsevier Inc. All rights reserved.

Health-related quality of life (HRQOL) in children with chronic liver disease in North East Iran using PedsQL™ 4.0

PubMed Central

Tehranian, Shahrzad; Jafari, Seyedali; Yousofi, Jamshid; Kiani, Mohammadali; Seyedin, Saleh; Khakshour, Ali; Bagherian, Rita; Karami, Hasan; Kianifar, Hamidreza

2015-01-01

Background: Health-related quality of life (HRQOL) is a concept that relates to an individual’s perception of health status in relation to the culture and value systems in which they live, in addition to their expectations, goals, concerns, and living standards. Considering the size of the population affected by Chronic Liver Diseases (CLDs) and the severity and chronic nature of the symptoms, there is an emerging need to evaluate the quality of life of patients using a standard protocol. The aim of this study is to assess the HRQOL in children with CLD based on child self-report and parent proxy-report forms. Methods: A total of 164 children, 55 CLD and 109 healthy children (aged 6–17 years), upon referral from the Pediatric Department at Ghaem Hospital in Mashhad from 2010 to 2014 were enrolled in this case-control study. We used the PedsQLTM 4.0 generic score scale to assess the HRQOL in children with CLD compared to the control group based on child self- and parent proxy reports. Results: According to the child self-reports, the total HRQOL in the case group (89.93±9.63) was significantly lower than control group (93.05±9.28) (p=0.006). We found significant differences in emotional functioning based on the CLD child self-reports (p=0.001) and their parent proxy-reports (p=0.002). Furthermore, there was a statistically significant correlation between the severity and physical functioning as reported by the Child-Pugh score (p=0.03, r= −0.31) and the MELD/PELD scores (p=0.01, r= −0.35), based on child self-reports. Gender, age of onset, CLD types, duration of the disease, and treatment showed no significant differences with total HRQOL. Conclusion: HRQOL is significantly lower in children with CLD in comparison to the normal population. We strongly recommend considering different aspects of quality of life, especially emotional functioning concomitant to the therapy programs. PMID:26396736

Patterns and influences in health-related quality of life in children with immune thrombocytopenia: A study from the Dallas ITP Cohort.

PubMed

Flores, Adolfo; Klaassen, Robert J; Buchanan, George R; Neunert, Cindy E

2017-08-01

Relationships between clinical/demographic factors and health-related quality of life (HRQoL) in childhood immune thrombocytopenia (ITP) remain poorly understood. Recent studies reveal conflicting information about factors that contribute to HRQoL. This was a prospective, single-institution, cohort study of newly diagnosed children with ITP. Serial evaluations of HRQoL were performed using the Kid's ITP Tools (KIT), scored from 0 (worst) to 100 (best), at enrollment and 1 week, 6 months, and 12 months following diagnosis. All visits included bleeding severity grading. Relationships between HRQoL and platelet count, treatment, bleeding severity, and course of disease were examined. A total of 99 children with newly diagnosed ITP were evaluable for analysis. KIT scores were low at diagnosis for parents (median 26, range 15-43) and children (median 65, range 55-81) and were not influenced by age or platelet count. At diagnosis, children who received treatment had lower platelet counts (P = 0.005), more severe hemorrhage (P < 0.0125), and lower HRQoL by parent, child, and proxy reporting (P < 0.05). Oral bleeding negatively impacted proxy-reported disease burden at diagnosis (P = 0.01). Persistence of disease and lower platelet counts at 6 and 12 month visits were the only factors noted to consistently impact quality of life beyond diagnosis for both parents and children. HRQoL is low at diagnosis but significantly improves over time. Patients with ongoing disease and lower platelet counts continue to have significant disease burden. © 2017 Wiley Periodicals, Inc.

Comparison of pediatric self reports and parent proxy reports utilizing PROMIS: Results from a chiropractic practice-based research network.

PubMed

Alcantara, Joel; Ohm, Jeanne; Alcantara, Junjoe

2017-11-01

To measure the cross-informant variant of pediatric quality of life (QoL) based on self-reports and parent proxy measures. A secondary analysis of baseline data obtained from two independent studies measuring the QoL based on the pediatric PROMIS-25 self-report and the PROMIS parent-proxy items banks. A scoring manual associated raw scores to a T score metric (mean = 50; SD = 10). Reliability of QoL ratings utilized the ICC while comparison of mean T Scores utilized the unpaired t-test. A total of 289 parent-child dyads comprised our study responders. Average age for parents and children was 41.27 years and 12.52 years, respectively. The mean T score (child self-report: parent proxy) for each QoL domains were: mobility (50.82:52.58), anxiety (46.73:44.21), depression (45.18:43.60), fatigue (45.59:43.92), peer-relationships (52.15:52.88) and pain interference (47.47:44.80). Parents tend to over-estimate their child's QoL based on measures of anxiety, depression, fatigue, peer-relationships and pain interference. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

Investigating the possible causal role of coffee consumption with prostate cancer risk and progression using Mendelian randomization analysis

PubMed Central

Martin, Richard M.; Geybels, Milan S.; Stanford, Janet L.; Shui, Irene; Eeles, Rosalind; Easton, Doug; Kote‐Jarai, Zsofia; Amin Al Olama, Ali; Benlloch, Sara; Muir, Kenneth; Giles, Graham G; Wiklund, Fredrik; Gronberg, Henrik; Haiman, Christopher A; Schleutker, Johanna; Nordestgaard, Børge G.; Travis, Ruth C; Neal, David; Pashayan, Nora; Khaw, Kay‐Tee; Blot, William; Thibodeau, Stephen; Maier, Christiane; Kibel, Adam S; Cybulski, Cezary; Cannon‐Albright, Lisa; Brenner, Hermann; Park, Jong; Kaneva, Radka; Batra, Jyotsna; Teixeira, Manuel R; Pandha, Hardev; Donovan, Jenny; Munafò, Marcus R.

2016-01-01

Coffee consumption has been shown in some studies to be associated with lower risk of prostate cancer. However, it is unclear if this association is causal or due to confounding or reverse causality. We conducted a Mendelian randomisation analysis to investigate the causal effects of coffee consumption on prostate cancer risk and progression. We used two genetic variants robustly associated with caffeine intake (rs4410790 and rs2472297) as proxies for coffee consumption in a sample of 46,687 men of European ancestry from 25 studies in the PRACTICAL consortium. Associations between genetic variants and prostate cancer case status, stage and grade were assessed by logistic regression and with all‐cause and prostate cancer‐specific mortality using Cox proportional hazards regression. There was no clear evidence that a genetic risk score combining rs4410790 and rs2472297 was associated with prostate cancer risk (OR per additional coffee increasing allele: 1.01, 95% CI: 0.98,1.03) or having high‐grade compared to low‐grade disease (OR: 1.01, 95% CI: 0.97,1.04). There was some evidence that the genetic risk score was associated with higher odds of having nonlocalised compared to localised stage disease (OR: 1.03, 95% CI: 1.01, 1.06). Amongst men with prostate cancer, there was no clear association between the genetic risk score and all‐cause mortality (HR: 1.00, 95% CI: 0.97,1.04) or prostate cancer‐specific mortality (HR: 1.03, 95% CI: 0.98,1.08). These results, which should have less bias from confounding than observational estimates, are not consistent with a substantial effect of coffee consumption on reducing prostate cancer incidence or progression. PMID:27741566

Mapping the Proxies of Memory and Learning Function in Senior Adults with High-performing, Normal Aging and Neurocognitive Disorders.

PubMed

Lu, Hanna; Xi, Ni; Fung, Ada W T; Lam, Linda C W

2018-06-09

Memory and learning, as the core brain function, shows controversial results across studies focusing on aging and dementia. One of the reasons is because of the multi-faceted nature of memory and learning. However, there is still a dearth of comparable proxies with psychometric and morphometric portrait in clinical and non-clinical populations. We aim to investigate the proxies of memory and learning function with direct and derived measures and examine their associations with morphometric features in senior adults with different cognitive status. Based on two modality-driven tests, we assessed the component-specific memory and learning in the individuals with high performing (HP), normal aging, and neurocognitive disorders (NCD) (n = 488). Structural magnetic resonance imaging was used to measure the regional cortical thickness with surface-based morphometry analysis in a subsample (n = 52). Compared with HP elderly, the ones with normal aging and minor NCD showed declined recognition memory and working memory, whereas had better learning performance (derived scores). Meanwhile, major NCD patients showed more breakdowns of memory and learning function. The correlation between proxies of memory and learning and cortical thickness exhibited the overlapped and unique neural underpinnings. The proxies of memory and learning could be characterized by component-specific constructs with psychometric and morphometric bases. Overall, the constructs of memory are more likely related to the pathological changes, and the constructs of learning tend to reflect the cognitive abilities of compensation.

Development of a questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumors: a pilot study.

PubMed

Oort, Q; Dirven, L; Meijer, W; Sikkes, S A M; Uitdehaag, B M J; Reijneveld, J C; Taphoorn, M J B

2017-03-01

Both dementia and brain tumor patients exhibit cognitive decline during the course of their disease. They might therefore experience similar problems with cognitively complex daily activities (i.e., instrumental activities of daily living (IADL)). The study's objective is to evaluate if the Amsterdam IADL Questionnaire © (A-IADL-Q), a 70-item IADL questionnaire developed for and validated in early dementia patients, is also applicable to glioma patients. The evaluation consisted of three steps. Predetermined decision rules defined which activities were retained, altered, added or excluded. In the first step, 6 neuro-oncology health care professionals (HCP) and 10 glioma patient-proxy dyads were asked to evaluate the 70 A-IADL-Q activities. In the second step, in-depth interviews were conducted with 6 HCPs and 6 other patient-proxy dyads to generate relevant activities specific to glioma patients not covered by the A-IADL-Q. In the third step, 6 new patient-proxy dyads were cognitively debriefed with the list of activities constructed in the previous steps. Results indicated that in step 1, after alterations and exclusions, 28/70 activities could be retained. Nine newly generated activities were subsequently added in step 2. In step 3, the 37 activities were presented to the patient-proxy dyads. Based on their input, several additional alterations and exclusions were made resulting in a list of 32 activities. In conclusion, this evaluation of the A-IADL-Q showed that dementia-specific IADL activities are only partly applicable to glioma patients, and that the addition of glioma specific IADL activities is necessary to capture the IADL construct. This underlines the need for a disease-specific IADL questionnaire for brain tumor patients.

[Validity and reliability of Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales in Chinese children and adolescents].

PubMed

Chen, Yu-Ming; He, Li-Ping; Mai, Jin-Cheng; Hao, Yuan-Tao; Xiong, Li-Hua; Chen, Wei-Qing; Wu, Jiang-Nan

2008-06-01

To evaluate the reliability and validity of parent proxy-report scales of Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) Generic Core Scales, the Chinese Version. 3493 school students aged 6-18 years were recruited using multistage cluster sampling method. Health-related quality of life was assessed using the above-mentioned PedsQL 4.0 scales. The internal consistency was assessed, using Cronbach's a coefficient, while its validity was tested through correlation analysis, t-test and exploratory factor analysis. The internal consistency reliability for Total Scale Score (Cronbach's alpha = 0.90), Physical Health Summary Score (alpha= 0.81), and Psychosocial Health Summary Score (alpha= 0.89) were excellent. Six major factors were extracted by factor analysis which basically matched the designed structure of the original version accounting for nearly 66% of the variance. The total Scale Score significantly decreased by 3.5 to 13.3 (P < 0.05) in children and adolescents who had diseases including cold, skin hypersensitiveness, food allergy, courbature or arthralgia, breathlessness with a frequency of 6 times or more per year or had asthma as compared to those with lower frequency (< or = 5 times/y) of the diseases or without asthma. We found moderate to high correlations between items and the subscales. Correlation coefficients ranged between 0.45 to 0.84 (P < 0.01). The reliability and validity of the parent proxy-report scales of PedsQL 4.0 Generic Core Scales of the Chinese Version were as good as the original version. Our findings suggested that the scales could be applied to evaluate the health-related quality of life in childhood children in similar Chinese regions to Guangzhou.

The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease.

PubMed

Niemitz, M; Seitz, D C M; Oebels, M; Schranz, D; Hövels-Gürich, H; Hofbeck, M; Kaulitz, R; Galm, C; Berger, F; Nagdymann, N; Stiller, B; Borth-Bruhns, T; Konzag, I; Balmer, C; Goldbeck, L

2013-12-01

Heart diseases are often associated with residual injuries, persisting functional restrictions, and long-term sequelae for psychosocial development. Currently, there are no disease-specific instruments to assess the health-related quality of life (HrQoL) of pre-school children. The aims of this study were to develop a parent proxy instrument to measure the HrQoL of children aged 3-7 years with a heart disease and to confirm its validity and reliability. Items from the Preschool Pediatric Cardiac Quality of Life Inventory (P-PCQLI) were generated through focus groups of caregivers. In a pilot study, comprehensibility and feasibility were tested. Five subdimensions were defined theoretically. Psychometric properties were analysed within a multicentre study with 167 parental caregivers. The final 52-item instrument contains a total score covering five moderately inter-correlated dimensions. The total score of the questionnaire showed a very high internal consistency (Cronbachs' α = 0.95). Test-retest correlation was at r tt = 0.96. External validity was indicated by higher correlations (r = 0.24-0.68) with a generic paediatric quality of life questionnaire (KINDL) compared to the Strengths and Difficulties Questionnaire (r = 0.17 to 0.59). Low P-PCQLI total scores were significantly associated with inpatient as opposed to outpatient treatment (t = 6.04, p < .001), with at least moderate disease severity ((t = 5.05, p < .001) NYHA classification) and with poorer prognosis (t = 5.53, p < .001) as estimated by the physician. The P-PCQLI is reliable and valid for pre-school children with a heart disease. It could be used as a screening instrument in routine care, and for evaluation of HrQoL outcomes in clinical trials and intervention research.

PedsQL™ Multidimensional Fatigue Scale in sickle cell disease: feasibility, reliability, and validity.

PubMed

Panepinto, Julie A; Torres, Sylvia; Bendo, Cristiane B; McCavit, Timothy L; Dinu, Bogdan; Sherman-Bien, Sandra; Bemrich-Stolz, Christy; Varni, James W

2014-01-01

Sickle cell disease (SCD) is an inherited blood disorder characterized by a chronic hemolytic anemia that can contribute to fatigue and global cognitive impairment in patients. The study objective was to report on the feasibility, reliability, and validity of the PedsQL™ Multidimensional Fatigue Scale in SCD for pediatric patient self-report ages 5-18 years and parent proxy-report for ages 2-18 years. This was a cross-sectional multi-site study whereby 240 pediatric patients with SCD and 303 parents completed the 18-item PedsQL™ Multidimensional Fatigue Scale. Participants also completed the PedsQL™ 4.0 Generic Core Scales. The PedsQL™ Multidimensional Fatigue Scale evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.90; parent proxy-report α = 0.95), and acceptable reliability for the three individual scales (patient self-report α = 0.77-0.84; parent proxy-report α = 0.90-0.97). Intercorrelations of the PedsQL™ Multidimensional Fatigue Scale with the PedsQL™ Generic Core Scales were predominantly in the large (≥0.50) range, supporting construct validity. PedsQL™ Multidimensional Fatigue Scale Scores were significantly worse with large effects sizes (≥0.80) for patients with SCD than for a comparison sample of healthy children, supporting known-groups discriminant validity. Confirmatory factor analysis demonstrated an acceptable to excellent model fit in SCD. The PedsQL™ Multidimensional Fatigue Scale demonstrated acceptable to excellent measurement properties in SCD. The results demonstrate the relative severity of fatigue symptoms in pediatric patients with SCD, indicating the potential clinical utility of multidimensional assessment of fatigue in patients with SCD in clinical research and practice. © 2013 Wiley Periodicals, Inc.

PedsQL™ Multidimensional Fatigue Scale in Sickle Cell Disease: Feasibility, Reliability and Validity

PubMed Central

Panepinto, Julie A.; Torres, Sylvia; Bendo, Cristiane B.; McCavit, Timothy L.; Dinu, Bogdan; Sherman-Bien, Sandra; Bemrich-Stolz, Christy; Varni, James W.

2013-01-01

Background Sickle cell disease (SCD) is an inherited blood disorder characterized by a chronic hemolytic anemia that can contribute to fatigue and global cognitive impairment in patients. The study objective was to report on the feasibility, reliability, and validity of the PedsQL™ Multidimensional Fatigue Scale in SCD for pediatric patient self-report ages 5–18 years and parent proxy-report for ages 2–18 years. Procedure This was a cross-sectional multi-site study whereby 240 pediatric patients with SCD and 303 parents completed the 18-item PedsQL™ Multidimensional Fatigue Scale. Participants also completed the PedsQL™ 4.0 Generic Core Scales. Results The PedsQL™ Multidimensional Fatigue Scale evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.90; parent proxy-report α = 0.95), and acceptable reliability for the three individual scales (patient self-report α = 0.77–0.84; parent proxy-report α = 0.90–0.97). Intercorrelations of the PedsQL™ Multidimensional Fatigue Scale with the PedsQL™ Generic Core Scales were predominantly in the large (≥ 0.50) range, supporting construct validity. PedsQL™ Multidimensional Fatigue Scale Scores were significantly worse with large effects sizes (≥0.80) for patients with SCD than for a comparison sample of healthy children, supporting known-groups discriminant validity. Confirmatory factor analysis demonstrated an acceptable to excellent model fit in SCD. Conclusions The PedsQL™ Multidimensional Fatigue Scale demonstrated acceptable to excellent measurement properties in SCD. The results demonstrate the relative severity of fatigue symptoms in pediatric patients with SCD, indicating the potential clinical utility of multidimensional assessment of fatigue in patients with SCD in clinical research and practice. PMID:24038960

Bone growth, limb proportions and non-specific stress in archaeological populations from Croatia.

PubMed

Pinhasi, R; Timpson, A; Thomas, M; Slaus, M

2014-01-01

The effect of environmental factors and, in particular, non-specific stress on the growth patterns of limbs and other body dimensions of children from past populations is not well understood. This study assesses whether growth of mediaeval and post-mediaeval children aged between 0-11.5 years from Adriatic (coastal) and continental Croatia varies by region and by the prevalence and type of non-specific stress. Dental ages were estimated using the Moorrees, Fanning and Hunt (MFH) scoring method. Growth of long bone diaphyses (femur, tibia, humerus, radius and ulna) was assessed by using a composite Z-score statistic (CZS). Clavicular length was measured as a proxy for upper trunk width, distal metaphyseal width of the femur was measured as a proxy for body mass and upper and lower intra-limb indices were calculated. Differences between sub-sets sampled by (a) region and (b) active vs healed non-specific stress indicators and (c) intra-limb indices were tested by Mann--Whitney U-tests and Analysis of Covariance (ANCOVA). Adriatic children attained larger dimensions-per-age than continental children. Children with healed stress lesions had larger dimensions-per-age than those with active lesions. No inter-regional difference was found in intra-limb indices. These findings highlight the complexity of growth patterns in past populations and indicate that variation in environmental conditions such as diet and differences in the nature of non-specific stress lesions both exert a significant effect on long bone growth.

Static and Dynamic Cognitive Reserve Proxy Measures: Interactions with Alzheimer’s Disease Neuropathology and Cognition

PubMed Central

Malek-Ahmadi, Michael; Lu, Sophie; Chan, YanYan; Perez, Sylvia E; Chen, Kewei; Mufson, Elliott J

2018-01-01

Objective Years of education are the most common proxy for measuring cognitive reserve (CR) when assessing the relationship between Alzheimer’s disease (AD) neuropathology and cognition. However, years of education may be limited as a CR proxy given that it represents a specific timeframe in early life and is static. Studies suggest that measures of intellectual function provide a dynamic estimate of CR that is superior to years of education since it captures the effect of continued learning over time. The present study determined whether dynamic measures of CR were better predictors of episodic memory and executive function in the presence of AD pathology than a static measure of CR. Methods Subjects examined died with a pre-mortem clinical diagnosis of no cognitive impaired, mild cognitive impairment and mild to moderate AD. CERAD and Braak stage were used to stratify the sample by AD pathology severity. Linear regression analyses using CR by CERAD and CR by Braak stage interaction terms were used to determine whether Extended Range Vocabulary Test (ERVT) scores or years of education were significantly associated with episodic memory composite (EMC) and executive function composite (EFC) performance. All models were adjusted for clinical diagnosis, age at death, gender, APOE e4 carrier status and Braak stage. Results For episodic memory, years of education by CERAD interaction were not statistically significant (β=-0.01, SE=0.01, p=0.53). By contrast, ERVT interaction with CERAD diagnosis was statistically significant (β=-0.03, SE=0.01, p=0.004). Among the models using Braak stages, none of the CR by pathology interactions were associated with EMC or EFC. Conclusion Results suggest that a dynamic rather than a static measure is a better indicator of CR and that the relationship between CR and cognition is dependent upon the severity of select AD criteria. PMID:29423338

You look all right to me: compromised nutritional status in paediatric patients with ulcerative colitis.

PubMed

Hill, Rebecca J; Davies, Peter S W

2013-04-01

It is reported that malnutrition is not a feature of ulcerative colitis (UC). Body mass index (BMI) is frequently used clinically to indicate nutritional status; however, it is a proxy measure at best, and body cell mass (BCM) is a much more accurate representation. The present study aims to investigate BMI in patients with UC in relation to their BCM. A total of 18 patients (7M; 11F) had their nutritional status (BCM) measured using total body potassium⁴⁰ counting every 6 months to yield a total of 77 measurements. BCM measurements were adjusted for height and sex, and BMI was calculated as weight/height², with z scores determined for both parameters. Disease activity was determined using the Pediatric Ulcerative Colitis Activity Index. Mean (±SD) height, weight, BMI, and BCM z scores were 0.39 (0.96), 0.20 (1.08), -0.05 (1.18), and -0.74 (1.41), respectively. No correlation was found between BMI and BCM z scores, and these z scores were significantly different (P=0.02), particularly in the moderate/severe disease activity group (P=0.01). Mean BCM z scores were -0.69 (1.65) of a z score below BMI z scores. Furthermore, where BMI z scores showed no relation to disease activity and no differences between disease activity categories, BCM z scores were significantly negatively correlated (r=-0.32, P=0.01), with significantly lower scores found in the moderate/severe group (P=0.01). Simply calculating BMI in patients with UC does not give adequate information regarding nutritional status, and more accurate, yet easily accessible "bedside" techniques need to be determined to improve patient care.

Deficits in facial emotion recognition indicate behavioral changes and impaired self-awareness after moderate to severe traumatic brain injury.

PubMed

Spikman, Jacoba M; Milders, Maarten V; Visser-Keizer, Annemarie C; Westerhof-Evers, Herma J; Herben-Dekker, Meike; van der Naalt, Joukje

2013-01-01

Traumatic brain injury (TBI) is a leading cause of disability, specifically among younger adults. Behavioral changes are common after moderate to severe TBI and have adverse consequences for social and vocational functioning. It is hypothesized that deficits in social cognition, including facial affect recognition, might underlie these behavioral changes. Measurement of behavioral deficits is complicated, because the rating scales used rely on subjective judgement, often lack specificity and many patients provide unrealistically positive reports of their functioning due to impaired self-awareness. Accordingly, it is important to find performance based tests that allow objective and early identification of these problems. In the present study 51 moderate to severe TBI patients in the sub-acute and chronic stage were assessed with a test for emotion recognition (FEEST) and a questionnaire for behavioral problems (DEX) with a self and proxy rated version. Patients performed worse on the total score and on the negative emotion subscores of the FEEST than a matched group of 31 healthy controls. Patients also exhibited significantly more behavioral problems on both the DEX self and proxy rated version, but proxy ratings revealed more severe problems. No significant correlation was found between FEEST scores and DEX self ratings. However, impaired emotion recognition in the patients, and in particular of Sadness and Anger, was significantly correlated with behavioral problems as rated by proxies and with impaired self-awareness. This is the first study to find these associations, strengthening the proposed recognition of social signals as a condition for adequate social functioning. Hence, deficits in emotion recognition can be conceived as markers for behavioral problems and lack of insight in TBI patients. This finding is also of clinical importance since, unlike behavioral problems, emotion recognition can be objectively measured early after injury, allowing for early detection and treatment of these problems.

How to determine decisional capacity in critically ill patients. Presume the patient can make decisions unless proven otherwise.

PubMed

Fleming, C; Momin, Z A; Brensilver, J M; Brandstetter, R D

1995-03-01

Decisional capacity includes ability to comprehend information, to make an informed choice, and to communicate that choice; it is specific to the decision at hand. Presume a patient has decisional capacity; an evaluation of incapacity must be justified. Administer a standardized mental status test to help assess alertness, attention, memory, and reasoning ability. A patient scoring below 10 on the Folstein Mini-Mental State Examination (maximum score, 30) probably does not have decisional capacity; one scoring from 10 to 15 probably can designate a proxy but not make complex health care decisions. Obtain psychiatric consultations for a patient who exhibits psychological barriers to decision making.

Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life

PubMed Central

Erhart, Michael; Rajmil, Luis; Herdman, Michael; Auquier, Pascal; Bruil, Jeanet; Power, Mick; Duer, Wolfgang; Abel, Thomas; Czemy, Ladislav; Mazur, Joanna; Czimbalmos, Agnes; Tountas, Yannis; Hagquist, Curt; Kilroe, Jean

2010-01-01

Background To assess the criterion and construct validity of the KIDSCREEN-10 well-being and health-related quality of life (HRQoL) score, a short version of the KIDSCREEN-52 and KIDSCREEN-27 instruments. Methods The child self-report and parent report versions of the KIDSCREEN-10 were tested in a sample of 22,830 European children and adolescents aged 8–18 and their parents (n = 16,237). Correlation with the KIDSCREEN-52 and associations with other generic HRQoL measures, physical and mental health, and socioeconomic status were examined. Score differences by age, gender, and country were investigated. Results Correlations between the 10-item KIDSCREEN score and KIDSCREEN-52 scales ranged from r = 0.24 to 0.72 (r = 0.27–0.72) for the self-report version (proxy-report version). Coefficients below r = 0.5 were observed for the KIDSCREEN-52 dimensions Financial Resources and Being Bullied only. Cronbach alpha was 0.82 (0.78), test–retest reliability was ICC = 0.70 (0.67) for the self- (proxy-)report version. Correlations between other children self-completed HRQoL questionnaires and KIDSCREEN-10 ranged from r = 0.43 to r = 0.63 for the KIDSCREEN children self-report and r = 0.22–0.40 for the KIDSCREEN parent proxy report. Known group differences in HRQoL between physically/mentally healthy and ill children were observed in the KIDSCREEN-10 self and proxy scores. Associations with self-reported psychosomatic complaints were r = −0.52 (−0.36) for the KIDSCREEN-10 self-report (proxy-report). Statistically significant differences in KIDSCREEN-10 self and proxy scores were found by socioeconomic status, age, and gender. Conclusions Our results indicate that the KIDSCREEN-10 provides a valid measure of a general HRQoL factor in children and adolescents, but the instrument does not represent well most of the single dimensions of the original KIDSCREEN-52. Test–retest reliability was slightly below a priori defined thresholds. PMID:20668950

Nutritional screening of patients at a memory clinic--association between patients' and their relatives' self-reports.

PubMed

Lyngroth, Anne Liv; Hernes, Susanne Miriam Sørensen; Madsen, Bengt-Ove; Söderhamn, Ulrika; Grov, Ellen Karine

2016-03-01

To compare individual reports by patients and relatives (proxy) of the Nutritional Form For the Elderly and relate the Nutritional Form For the Elderly scores to Mini Mental Status Examination scores, weight loss, Body Mass Index, five-point Clock Drawing Test and background variables. Undernutrition or risk of undernutrition is a significant problem among people with dementia. A poor nutritional state increases the risk of infections, delayed convalescence after acute illness and reduced quality of life. A cross-sectional study. Application of the Nutritional Form For the Elderly in addition to clinical nutrition parameters and cognitive tests in a memory clinic among 213 persons referred for assessment due to possible cognitive impairment or dementia. Patients' and proxy Nutritional Form For the Elderly scores yielded comparative results. Nutritional Form For the Elderly scores ≥6 (medium to high risk of undernutrition) were found in 32% of the patients vs. 43% of proxy. Mean Mini Mental Status Examination score was 23·2 (SD 4·5) and 50% failed the Clock Drawing Test. Involuntary weight loss was reported by 42% of the patients, and in 26% of the patients, Body Mass Index values were below 22 kg/m(2) , indicating undernutrition. By regression analysis, Clock Drawing Test (p = 0·019) and Mini Mental Status Examination (p = 0·04) might predict the risk of reduced nutritional status. The study demonstrates that a significant proportion of patients at our memory clinic were at nutritional risk. Corresponding results exist between patients' and proxy Nutritional Form For the Elderly scores; however, the patients assessed themselves more well-nourished as compared to proxy assessment. The discrepancies seem to increase with more severe cognitive impairment. Females and single-dwelling individuals were at higher risk of undernutrition compared to males and cohabitants. Self-reporting and proxy-rating seem both applicable for nutritional screening among moderate cognitive impaired. Cognitive decline seems to affect the accuracy when patients rate themselves. A reduced Mini Mental Status Examination and/or failed Clock Drawing Test might predict the risk of undernutrition. © 2016 John Wiley & Sons Ltd.

Development of a Telephone Interview Version of the Chedoke-McMaster Stroke Assessment Activity Inventory

PubMed Central

Miller, Patricia A.; Pooyania, Sepideh; Stratford, Paul

2016-01-01

Purpose: To develop a telephone version of the Chedoke-McMaster Stroke Assessment Activity Inventory (CMSA–AI) and estimate the test–retest reliability, interrater reliability (between participant and proxy), and construct validity of the scores for individuals with stroke. Methods: Adults with stroke and their caregivers or proxies were included. Participants were assessed with the CMSA–AI at discharge from a stroke rehabilitation unit and interviewed using the telephone version (TCMSA–AI). Two months after discharge, participants were evaluated with the CMSA–AI and interviewed over the phone using the TCMSA–AI on two occasions 2–3 days apart. Proxies were interviewed with the TCMSA–AI within another 2–3 days. Results: The mean age of the 53 participants with stroke was 62 years; 59% were male; 43% had right-side hemiparesis; 42 completed follow-up interviews; and 18 had proxies who also participated. Test–retest reliability showed an intra-class correlation coefficient of 0.98 (95% CI: 0.96, 0.99) for the total score, 0.96 (95% CI: 0.91, 0.98) for the Gross Motor Function Index, and 0.96 (95% CI: 0.91, 0.98) for the Walking Index, and an interrater reliability (between participant and proxy) of 0.75 (95% CI: 0.28, 0.90) for total score. Spearman's rho correlation between CMSA–AI and TCMSA–AI total scores was 0.62 (lower-sided 95% CI: 0.42) at discharge and 0.90 (lower-sided 95% CI: 0.82) at 2 months after discharge. Correlations between the change scores of the CMSA–AI and TCMSA–AI were 0.50 or lower. Conclusion: There is potential for remote evaluation of the functional mobility of individuals with stroke in research and clinical settings. PMID:27909370

Development of a Telephone Interview Version of the Chedoke-McMaster Stroke Assessment Activity Inventory.

PubMed

Barclay, Ruth; Miller, Patricia A; Pooyania, Sepideh; Stratford, Paul

Purpose: To develop a telephone version of the Chedoke-McMaster Stroke Assessment Activity Inventory (CMSA-AI) and estimate the test-retest reliability, interrater reliability (between participant and proxy), and construct validity of the scores for individuals with stroke. Methods: Adults with stroke and their caregivers or proxies were included. Participants were assessed with the CMSA-AI at discharge from a stroke rehabilitation unit and interviewed using the telephone version (TCMSA-AI). Two months after discharge, participants were evaluated with the CMSA-AI and interviewed over the phone using the TCMSA-AI on two occasions 2-3 days apart. Proxies were interviewed with the TCMSA-AI within another 2-3 days. Results: The mean age of the 53 participants with stroke was 62 years; 59% were male; 43% had right-side hemiparesis; 42 completed follow-up interviews; and 18 had proxies who also participated. Test-retest reliability showed an intra-class correlation coefficient of 0.98 (95% CI: 0.96, 0.99) for the total score, 0.96 (95% CI: 0.91, 0.98) for the Gross Motor Function Index, and 0.96 (95% CI: 0.91, 0.98) for the Walking Index, and an interrater reliability (between participant and proxy) of 0.75 (95% CI: 0.28, 0.90) for total score. Spearman's rho correlation between CMSA-AI and TCMSA-AI total scores was 0.62 (lower-sided 95% CI: 0.42) at discharge and 0.90 (lower-sided 95% CI: 0.82) at 2 months after discharge. Correlations between the change scores of the CMSA-AI and TCMSA-AI were 0.50 or lower. Conclusion: There is potential for remote evaluation of the functional mobility of individuals with stroke in research and clinical settings.

A new gender-specific model for skin autofluorescence risk stratification

PubMed Central

Ahmad, Muhammad S.; Damanhouri, Zoheir A.; Kimhofer, Torben; Mosli, Hala H.; Holmes, Elaine

2015-01-01

Advanced glycation endproducts (AGEs) are believed to play a significant role in the pathophysiology of a variety of diseases including diabetes and cardiovascular diseases. Non-invasive skin autofluorescence (SAF) measurement serves as a proxy for tissue accumulation of AGEs. We assessed reference SAF and skin reflectance (SR) values in a Saudi population (n = 1,999) and evaluated the existing risk stratification scale. The mean SAF of the study cohort was 2.06 (SD = 0.57) arbitrary units (AU), which is considerably higher than the values reported for other populations. We show a previously unreported and significant difference in SAF values between men and women, with median (range) values of 1.77 AU (0.79–4.84 AU) and 2.20 AU (0.75–4.59 AU) respectively (p-value « 0.01). Age, presence of diabetes and BMI were the most influential variables in determining SAF values in men, whilst in female participants, SR was also highly correlated with SAF. Diabetes, hypertension and obesity all showed strong association with SAF, particularly when gender differences were taken into account. We propose an adjusted, gender-specific disease risk stratification scheme for Middle Eastern populations. SAF is a potentially valuable clinical screening tool for cardiovascular risk assessment but risk scores should take gender and ethnicity into consideration for accurate diagnosis. PMID:25974028

Effect of choice of outcome measure on studies of the etiology of obesity in children.

PubMed

Basterfield, Laura; Pearce, Mark S; Adamson, Ashley J; Reilly, Jessica K; Parkinson, Kathryn N; Reilly, John J

2012-12-01

Epidemiologic studies of the etiology of childhood obesity often use proxies for adiposity as outcomes. This study aimed to compare the ability of a range of proxy measures to detect associations with sedentary behavior. Longitudinal study of children in the Gateshead Millennium Study who were 7 years at baseline and 9 years at follow-up. Associations between 2-year changes in objectively measured sedentary behavior and changes in proxies for adiposity (waist circumference, waist Z score, body mass index, body mass index Z score) and measurement of body composition (fat mass index from bioelectric impedance) were examined. Associations were tested with linear regression. Associations between 2-year increases in sedentary behavior and increases in adiposity were detectable by using the fat mass index as the outcome, but not the simple proxy measures of adiposity, as outcomes. Proxy measures are inferior to measures of body composition as outcomes in epidemiologic studies. Copyright © 2012 Elsevier Inc. All rights reserved.

Quality of life in children with chronic kidney disease.

PubMed

Dotis, John; Pavlaki, Antigoni; Printza, Nikoleta; Stabouli, Stella; Antoniou, Stamatia; Gkogka, Chrysa; Kontodimopoulos, Nikolaos; Papachristou, Fotios

2016-12-01

Progressive chronic kidney disease (CKD), irrespective of the underlying etiology, affects the quality of life (QoL) of children due to the need for regular follow-up visits, a strict medication program and diet intake. The Greek version of the KIDSCREEN-52 multidimensional questionnaire was used in children with CKD, renal transplantation (RT) and in a control group (CG) of healthy children. Fifty-five patients between 8 and 18 years, with CKD (n = 25), RT (n = 16) and with end-stage renal disease (ESRD) on peritoneal dialysis (PD) (n = 14) were included. Each group of studied children was compared with the CG (n = 55), the validation sample (VS) (n = 1200) and the parent proxy scores. Physical well-being of all studied children was significantly lower compared to CG (p = 0.004). In contrast, all studied children between 8 and 11 years showed better social acceptance compared to VS (p = 0.0001). When QoL of children with CKD was compared with parent proxy QoL, conflicting opinions were observed in several dimensions, such as self-perception (p = 0.023), autonomy (p = 0.012), school environment (p = 0.012) and financial resources (p = 0.03). QoL and mainly the dimension of physical well-being, may be affected dramatically in children with CKD unrelated to disease stage. In early school years children with CKD seem to feel higher social acceptance than the healthy controls, exhibiting better score in this dimension. Optimal care requires attention not only to medical management, but also to an assessment of QoL factors, that may help promote pediatric patient's health.

The effects of lifelong cognitive lifestyle on executive function in older people with Parkinson's disease.

PubMed

Hindle, John V; Martin-Forbes, Pamela A; Martyr, Anthony; Bastable, Alexandra J M; Pye, Kirstie L; Mueller Gathercole, Virginia C; Thomas, Enlli M; Clare, Linda

2017-12-01

Active lifelong cognitive lifestyles increase cognitive reserve and have beneficial effects on global cognition, cognitive decline and dementia risk in Parkinson's disease (PD). Executive function is particularly impaired even in early PD, and this impacts on quality of life. The effects of lifelong cognitive lifestyle on executive function in PD have not been studied previously. This study examined the association between lifelong cognitive lifestyle, as a proxy measure of cognitive reserve, and executive function in people with PD. Sixty-nine people diagnosed with early PD without dementia were recruited as part of the Bilingualism as a protective factor in Age-related Neurodegenerative Conditions study. Participants completed a battery of tests of executive function. The Lifetime of Experiences Questionnaire was completed as a comprehensive assessment of lifelong cognitive lifestyle. Non-parametric correlations compared clinical measures with executive function scores. Cross-sectional analyses of covariance were performed comparing the performance of low and high cognitive reserve groups on executive function tests. Correlational analyses showed that better executive function scores were associated with younger age, higher levodopa dose and higher Lifetime of Experiences Questionnaire scores. Higher cognitive reserve was associated with better motor function, but high and low cognitive reserve groups did not differ in executive function. Cognitive reserve, although associated with global cognition, does not appear to be associated with executive function. This differential effect may reflect the specific cognitive profile of PD. The long-term effects of cognitive reserve on executive function in PD require further exploration. Copyright © 2017 John Wiley & Sons, Ltd. Copyright © 2017 John Wiley & Sons, Ltd.

Associations with health-related quality of life after intracerebral haemorrhage: pooled analysis of INTERACT studies.

PubMed

Delcourt, Candice; Zheng, Danni; Chen, Xiaoying; Hackett, Maree; Arima, Hisatomi; Hata, Jun; Heeley, Emma; Al-Shahi Salman, Rustam; Woodward, Mark; Huang, Yining; Robinson, Thompson; Lavados, Pablo M; Lindley, Richard I; Stapf, Christian; Davies, Leo; Chalmers, John; Anderson, Craig S; Sato, Shoichiro

2017-01-01

Limited data exist on health-related quality of life (HRQoL) after intracerebral haemorrhage (ICH). We aimed to determine baseline factors associated with HRQoL among participants of the pilot and main phases of the Intensive Blood Pressure Reduction in Acute Cerebral Haemorrhage Trials (INTERACT 1 and 2). The INTERACT studies were randomised controlled trials of early intensive blood pressure (BP) lowering in patients with ICH (<6 hours) and elevated systolic BP (150-220 mm Hg). HRQoL was determined using the European Quality of Life Scale (EQ-5D) at 90 days, completed by patients or proxy responders. Binary logistic regression analyses were performed to identify factors associated with poor overall HRQoL. 2756 patients were included. Demographic, clinical and radiological factors associated with lower EQ-5D utility score were age, randomisation outside of China, antithrombotic use, high baseline National Institutes of Health Stroke Scale (NIHSS) score, larger ICH, presence of intraventricular extension and use of proxy responders. High (≥14) NIHSS score, larger ICH and proxy responders were associated with low scores in all five dimensions of the EQ-5D. The NIHSS score had a strong association with poor HRQoL (p<0.001). Female gender and antithrombotic use were associated with decreased scores in dimensions of pain/discomfort and usual activity, respectively. Poor HRQoL was associated with age, comorbidities, proxy source of assessment, clinical severity and ICH characteristics. The strongest association was with initial clinical severity defined by high NIHSS score. NCT00226096 and NCT00716079; Post-results. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

[Münchausen syndrome by proxy].

PubMed

Scheuerman, Oded; Grinbaum, Iris; Garty, Ben Zion

2013-11-01

Münchausen syndrome by proxy (also known as factitious disorder by proxy) is a psychiatric disorder which consists of fabricating or inducing illness in a child, usually by his mother. The motivation for the perpetrator's behavior is receivng satisfaction from the investigations and treatments that the child receives and from the medical environment, as part of a unique mental disturbance. External incentives for the behavior (such as economic gain) are absent. During the last few years about 20 cases of Münchausen syndrome by proxy were diagnosed in our ward. We describe a few less typical cases of patients with Münchausen syndrome by proxy. In all cases the offender, the mother, had only secondary education and no medical background. The socioeconomic background was variable. Recognition of the syndrome and a high index of clinical suspicion are needed in order to diagnose the disorder. Suspicious signs and symptoms include prolonged and illogical course of disease, odd complications, exacerbation that appear just before discharge from the hospital and symptoms that occur only in the presence of a specific care giver. Münchausen syndrome by proxy is not very rare. It appears in all ethnic groups, socioeconomic status and educational backgrounds.

Assessing behavioural changes in ALS: cross-validation of ALS-specific measures.

PubMed

Pinto-Grau, Marta; Costello, Emmet; O'Connor, Sarah; Elamin, Marwa; Burke, Tom; Heverin, Mark; Pender, Niall; Hardiman, Orla

2017-07-01

The Beaumont Behavioural Inventory (BBI) is a behavioural proxy report for the assessment of behavioural changes in ALS. This tool has been validated against the FrSBe, a non-ALS-specific behavioural assessment, and further comparison of the BBI against a disease-specific tool was considered. This study cross-validates the BBI against the ALS-FTD-Q. Sixty ALS patients, 8% also meeting criteria for FTD, were recruited. All patients were evaluated using the BBI and the ALS-FTD-Q, completed by a carer. Correlational analysis was performed to assess construct validity. Precision, sensitivity, specificity, and overall accuracy of the BBI when compared to the ALS-FTD-Q, were obtained. The mean score of the whole sample on the BBI was 11.45 ± 13.06. ALS-FTD patients scored significantly higher than non-demented ALS patients (31.6 ± 14.64, 9.62 ± 11.38; p < 0.0001). A significant large positive correlation between the BBI and the ALS-FTD-Q was observed (r = 0.807, p < 0.0001), and no significant correlations between the BBI and other clinical/demographic characteristics indicate good convergent and discriminant validity, respectively. 72% of overall concordance was observed. Precision, sensitivity, and specificity for the classification of severely impaired patients were adequate. However, lower concordance in the classification of mild behavioural changes was observed, with higher sensitivity using the BBI, most likely secondary to BBI items which endorsed behavioural aspects not measured by the ALS-FTD-Q. Good construct validity has been further confirmed when the BBI is compared to an ALS-specific tool. Furthermore, the BBI is a more comprehensive behavioural assessment for ALS, as it measures the whole behavioural spectrum in this condition.

Mortality trajectory analysis reveals the drivers of sex-specific epidemiology in natural wildlife–disease interactions

PubMed Central

McDonald, Jennifer L.; Smith, Graham C.; McDonald, Robbie A.; Delahay, Richard J.; Hodgson, Dave

2014-01-01

In animal populations, males are commonly more susceptible to disease-induced mortality than females. However, three competing mechanisms can cause this sex bias: weak males may simultaneously be more prone to exposure to infection and mortality; being ‘male’ may be an imperfect proxy for the underlying driver of disease-induced mortality; or males may experience increased severity of disease-induced effects compared with females. Here, we infer the drivers of sex-specific epidemiology by decomposing fixed mortality rates into mortality trajectories and comparing their parameters. We applied Bayesian survival trajectory analysis to a 22-year longitudinal study of a population of badgers (Meles meles) naturally infected with bovine tuberculosis (bTB). At the point of infection, infected male and female badgers had equal mortality risk, refuting the hypothesis that acquisition of infection occurs in males with coincidentally high mortality. Males and females exhibited similar levels of heterogeneity in mortality risk, refuting the hypothesis that maleness is only a proxy for disease susceptibility. Instead, sex differences were caused by a more rapid increase in male mortality rates following infection. Males are indeed more susceptible to bTB, probably due to immunological differences between the sexes. We recommend this mortality trajectory approach for the study of infection in animal populations. PMID:25056621

A parent-child dyad approach to the assessment of health status and health-related quality of life in children with asthma.

PubMed

Ungar, Wendy J; Boydell, Katherine; Dell, Sharon; Feldman, Brian M; Marshall, Deborah; Willan, Andrew; Wright, James G

2012-08-01

Assessment of health state and health-related quality of life (HR-QOL) are limited by a child's age and cognitive ability. Parent-proxy reports are known to differ from children's reports. Simultaneous assessment using a parent-child dyad is an alternative approach. Our objective was to assess the validity, reliability and responsiveness of a parent-child dyad approach to utility and HR-QOL assessment of paediatric asthma health states. The setting was specialist care in a hospital-based asthma clinic. Participants were 91 girls and boys with asthma aged 8 to 17 years and 91 parents. The intervention employed was parent-child dyad administration of the Health Utilities Index (HUI) 2 and 3, the Pediatric Quality of Life Inventory™ (PedsQL™) Core and Asthma modules, and the Pediatric Asthma Quality of Life Questionnaire (PAQLQ). Questionnaires were administered by interview to children and parents separately and then together as a dyad to assess the child's health state. The dyad interview was repeated at the next clinic visit. Dyad-child agreement was measured by intra-class correlation (ICC) coefficient; Spearman correlations were used to assess convergent validity. Test-retest reliability was assessed in 28 children who remained clinically stable between visits with a two-way ICC coefficient. Responsiveness to change from baseline was assessed with Spearman coefficients in 30 children who demonstrated clinical change between visits. There was no significant agreement between parent and child for the HUI2 or HUI3 whereas agreement between dyad and child was 0.55 (95% confidence interval [CI] 0.36, 0.69) for the HUI2 and 0.74 (95% CI 0.61, 0.82) for the HUI3 overall. With respect to dyad performance characteristics, both HUI2 and HUI3 overall scores demonstrated moderate convergent validity with the generic PedsQL™ Core domains (range r = 0.30-0.52; p < 0.01). Dyad HUI2 attributes demonstrated moderate convergent validity with the generic PedsQL™ Core domains of similar constructs (range r = 0.35-0.43; p < 0.001) and weaker convergent validity with disease-specific domains (range r = 0.13-0.32). Dyad HUI3 attributes demonstrated weaker convergent validity compared with the HUI2. For the assessment of test-retest reliability, significant agreement between baseline and follow-up was observed for dyad HUI2 total (r = 0.53), dyad PedsQL™ Core summary (r = 0.70) and select dyad disease-specific domains. Significant responsiveness (r > 0.4; p < 0.05) was observed for dyad HUI2 total score change over time as correlated with dyad HUI3, dyad PedsQL™ Core summary and select disease-specific domains. The parent-child dyad approach demonstrated moderate to strong performance characteristics in generic and disease-specific questionnaires suggesting it may be a valuable alternative to relying on parent proxies for assessing children's utility and HR-QOL. Future research in additional paediatric populations, younger children and a population-based sample would be useful.

A Parent-Child Dyad Approach to the Assessment of Health Status and Health-Related Quality of Life in Children with Asthma

PubMed Central

Ungar, Wendy J.; Boydell, Katherine; Dell, Sharon; Feldman, Brian M.; Marshall, Deborah; Willan, Andrew; Wright, James G.

2016-01-01

Background Assessment of health state and health-related quality of life (HR-QOL) are limited by a child’s age and cognitive ability. Parent-proxy reports are known to differ from children’s reports. Simultaneous assessment using a parent-child dyad is an alternative approach. Objective Our objective was to assess the validity, reliability and responsiveness of a parent-child dyad approach to utility and HR-QOL assessment of paediatric asthma health states. Methods The setting was specialist care in a hospital-based asthma clinic. Participants were 91 girls and boys with asthma aged 8 to 17 years and 91 parents. The intervention employed was parent-child dyad administration of the Health Utilities Index (HUI) 2 and 3, the Pediatric Quality of Life Inventory™ (PedsQL™) Core and Asthma modules, and the Pediatric Asthma Quality of Life Questionnaire (PAQLQ). Questionnaires were administered by interview to children and parents separately and then together as a dyad to assess the child’s health state. The dyad interview was repeated at the next clinic visit. Dyad-child agreement was measured by intra-class correlation (ICC) coefficient; Spearman correlations were used to assess convergent validity. Test-retest reliability was assessed in 28 children who remained clinically stable between visits with a two-way ICC coefficient. Responsiveness to change from baseline was assessed with Spearman coefficients in 30 children who demonstrated clinical change between visits. Results There was no significant agreement between parent and child for the HUI2 or HUI3 whereas agreement between dyad and child was 0.55 (95% confidence interval [CI] 0.36, 0.69) for the HUI2 and 0.74 (95% CI 0.61, 0.82) for the HUI3 overall. With respect to dyad performance characteristics, both HUI2 and HUI3 overall scores demonstrated moderate convergent validity with the generic PedsQL™ Core domains (range r = 0.30–0.52; p < 0.01). Dyad HUI2 attributes demonstrated moderate convergent validity with the generic PedsQL™ Core domains of similar constructs (range r = 0.35–0.43; p < 0.001) and weaker convergent validity with disease-specific domains (range r = 0.13–0.32). Dyad HUI3 attributes demonstrated weaker convergent validity compared with the HUI2. For the assessment of test-retest reliability, significant agreement between baseline and follow-up was observed for dyad HUI2 total (r = 0.53), dyad PedsQL™ Core summary (r = 0.70) and select dyad disease-specific domains. Significant responsiveness (r > 0.4; p < 0.05) was observed for dyad HUI2 total score change over time as correlated with dyad HUI3, dyad PedsQL™ Core summary and select disease-specific domains. Conclusions The parent-child dyad approach demonstrated moderate to strong performance characteristics in generic and disease-specific questionnaires suggesting it may be a valuable alternative to relying on parent proxies for assessing children’s utility and HR-QOL. Future research in additional paediatric populations, younger children and a population-based sample would be useful. PMID:22788260

Review: Quality of Life in Children with Non-cystic Fibrosis Bronchiectasis.

PubMed

Nathan, Anna Marie; de Bruyne, Jessie Anne; Eg, Kah Peng; Thavagnanam, Surendran

2017-01-01

Non-cystic fibrosis bronchiectasis (NCFB) has gained renewed interest, due to its increasing health-care burden. Annual mortality statistics in England and Wales showed that under 1,000 people die from bronchiectasis each year, and this number is increasing by 3% yearly. Unfortunately, there is a severe lack of well-powered, randomized controlled trials to guide clinicians how to manage NCFB effectively. Quality-of-life (QOL) measures in NCFB are an important aspect of clinical care that has not been studied well. Commonly used disease-specific questionnaires in children with NCFB are the St George's Respiratory Questionnaire, Short Form-36, the Leicester Cough Questionnaire, and the Parent Cough-Specific Quality of Life questionnaire (PC-QOL). Of these, only the PC-QOL can be used in young children, as it is a parent-proxy questionnaire. We reviewed pediatric studies looking at QOL in children with NCFB and cystic fibrosis. All types of airway clearance techniques appear to be safe and have no significant benefit over each other. Number of exacerbations and hospitalizations correlated with QOL scores, while symptom subscales correlated with lung function, worse QOL, frequent antibiotic requirements, and duration of regular follow-up in only one study. There was a correlation between QOL and age of diagnosis in children with primary ciliary dyskinesia. Other studies have shown no relationship between QOL scores and etiology of NCFB as well as CT changes. As for treatments, oral azithromycin and yoga have demonstrated some improvement in QOL scores. In conclusion, more studies are required to accurately determine important factors contributing to QOL.

Health-related quality of life in Indian children: A community-based cross-sectional survey

PubMed Central

Raj, Manu; Sudhakar, Abish; Roy, Rinku; Champaneri, Bhavik; Joy, Teena Mary; Kumar, Raman Krishna

2017-01-01

Background & objectives: There are limited data on health-related quality of life (HRQOL) related to Indian children. The objective of this study was to construct a generic HRQOL reference for children aged 2-18 yr from a community setting. Methods: The study was a community-based cross-sectional survey. A total of 719 children/adolescents in the age group of 2-18 yr were enrolled using stratified random cluster sampling. A total of 40 clusters (cluster size 18) were selected for the study. The data contained child self-report and parent proxy report from healthy children and their parents/caretakers. The Pediatric Quality of Life Inventory 4.0 (PedsQL4.0) Generic Core Scale was used to collect HRQOL data. Questionnaires were self-administered for parents and children aged 8-18 yr. In the age group of five to seven years, parents assisted the children in filling questionnaires. Results: The mean HRQOL total scores from child self-report and parent proxy report were 87.50±11.10 and 90.10±9.50 respectively, for children aged 2-18 yr. Social functioning had the highest scores and emotional functioning had the lowest scores for the entire sample and subgroups. The mean values for HRQOL in the current study were significantly different from the reference study for both child (87.39 vs. 83.91, P<0.001) and parent proxy reports (90.03 vs. 82.29, P<0.001) when compared between children aged 2-16 yr. Interpretation & conclusions: The study provided reference values for HRQOL in healthy children and adolescents from Kerala, India, that appeared to be different from existing international reference. Similar studies need to be done in different parts of India to generate a country-specific HRQOL reference for Indian children. PMID:28862185

Health-related quality of life in Indian children: A community-based cross-sectional survey.

PubMed

Raj, Manu; Sudhakar, Abish; Roy, Rinku; Champaneri, Bhavik; Joy, Teena Mary; Kumar, Raman Krishna

2017-04-01

There are limited data on health-related quality of life (HRQOL) related to Indian children. The objective of this study was to construct a generic HRQOL reference for children aged 2-18 yr from a community setting. The study was a community-based cross-sectional survey. A total of 719 children/adolescents in the age group of 2-18 yr were enrolled using stratified random cluster sampling. A total of 40 clusters (cluster size 18) were selected for the study. The data contained child self-report and parent proxy report from healthy children and their parents/caretakers. The Pediatric Quality of Life Inventory 4.0 (PedsQL4.0) Generic Core Scale was used to collect HRQOL data. Questionnaires were self-administered for parents and children aged 8-18 yr. In the age group of five to seven years, parents assisted the children in filling questionnaires. The mean HRQOL total scores from child self-report and parent proxy report were 87.50±11.10 and 90.10±9.50 respectively, for children aged 2-18 yr. Social functioning had the highest scores and emotional functioning had the lowest scores for the entire sample and subgroups. The mean values for HRQOL in the current study were significantly different from the reference study for both child (87.39 vs. 83.91, P<0.001) and parent proxy reports (90.03 vs. 82.29, P<0.001) when compared between children aged 2-16 yr. The study provided reference values for HRQOL in healthy children and adolescents from Kerala, India, that appeared to be different from existing international reference. Similar studies need to be done in different parts of India to generate a country-specific HRQOL reference for Indian children.

Methods to Assess the Utility of Proxies

DTIC Science & Technology

1990-08-01

PROXIES Gottfredson [5 has reviewed ways to analyze potential proxies for the National Academy of Science committee that oversees the work of the...distribution might get the highest possible scores on the test. Together, the Gottfredson and Allred papers suggest that different analyses are required...summarizes the implications of the Gottfredson and Allred papers. These two papers suggest that different kinds of analyses should be done, depending

Investigating the possible causal role of coffee consumption with prostate cancer risk and progression using Mendelian randomization analysis.

PubMed

Taylor, Amy E; Martin, Richard M; Geybels, Milan S; Stanford, Janet L; Shui, Irene; Eeles, Rosalind; Easton, Doug; Kote-Jarai, Zsofia; Amin Al Olama, Ali; Benlloch, Sara; Muir, Kenneth; Giles, Graham G; Wiklund, Fredrik; Gronberg, Henrik; Haiman, Christopher A; Schleutker, Johanna; Nordestgaard, Børge G; Travis, Ruth C; Neal, David; Pashayan, Nora; Khaw, Kay-Tee; Blot, William; Thibodeau, Stephen; Maier, Christiane; Kibel, Adam S; Cybulski, Cezary; Cannon-Albright, Lisa; Brenner, Hermann; Park, Jong; Kaneva, Radka; Batra, Jyotsna; Teixeira, Manuel R; Pandha, Hardev; Donovan, Jenny; Munafò, Marcus R

2017-01-15

Coffee consumption has been shown in some studies to be associated with lower risk of prostate cancer. However, it is unclear if this association is causal or due to confounding or reverse causality. We conducted a Mendelian randomisation analysis to investigate the causal effects of coffee consumption on prostate cancer risk and progression. We used two genetic variants robustly associated with caffeine intake (rs4410790 and rs2472297) as proxies for coffee consumption in a sample of 46,687 men of European ancestry from 25 studies in the PRACTICAL consortium. Associations between genetic variants and prostate cancer case status, stage and grade were assessed by logistic regression and with all-cause and prostate cancer-specific mortality using Cox proportional hazards regression. There was no clear evidence that a genetic risk score combining rs4410790 and rs2472297 was associated with prostate cancer risk (OR per additional coffee increasing allele: 1.01, 95% CI: 0.98,1.03) or having high-grade compared to low-grade disease (OR: 1.01, 95% CI: 0.97,1.04). There was some evidence that the genetic risk score was associated with higher odds of having nonlocalised compared to localised stage disease (OR: 1.03, 95% CI: 1.01, 1.06). Amongst men with prostate cancer, there was no clear association between the genetic risk score and all-cause mortality (HR: 1.00, 95% CI: 0.97,1.04) or prostate cancer-specific mortality (HR: 1.03, 95% CI: 0.98,1.08). These results, which should have less bias from confounding than observational estimates, are not consistent with a substantial effect of coffee consumption on reducing prostate cancer incidence or progression. © 2016 The Authors International Journal of Cancer published by John Wiley & Sons Ltd on behalf of UICC.

Associations of the MCM6-rs3754686 proxy for milk intake in Mediterranean and American populations with cardiovascular biomarkers, disease and mortality: Mendelian randomization.

PubMed

Smith, Caren E; Coltell, Oscar; Sorlí, Jose V; Estruch, Ramón; Martínez-González, Miguel Ángel; Salas-Salvadó, Jordi; Fitó, Montserrat; Arós, Fernando; Dashti, Hassan S; Lai, Chao Q; Miró, Leticia; Serra-Majem, Lluís; Gómez-Gracia, Enrique; Fiol, Miquel; Ros, Emilio; Aslibekyan, Stella; Hidalgo, Bertha; Neuhouser, Marian L; Di, Chongzhi; Tucker, Katherine L; Arnett, Donna K; Ordovás, José M; Corella, Dolores

2016-09-14

Controversy persists on the association between dairy products, especially milk, and cardiovascular diseases (CVD). Genetic proxies may improve dairy intake estimations, and clarify diet-disease relationships through Mendelian randomization. We meta-analytically (n ≤ 20,089) evaluated associations between a lactase persistence (LP) SNP, the minichromosome maintenance complex component 6 (MCM6)-rs3754686C>T (nonpersistence>persistence), dairy intake, and CVD biomarkers in American (Hispanics, African-American and Whites) and Mediterranean populations. Moreover, we analyzed longitudinal associations with milk, CVD and mortality in PREDIMED), a randomized Mediterranean diet (MedDiet) intervention trial (n = 7185). The MCM6-rs3754686/MCM6-rs309180 (as proxy), LP-allele (T) was strongly associated with higher milk intake, but inconsistently associated with glucose and lipids, and not associated with CVD or total mortality in the whole population. Heterogeneity analyses suggested some sex-specific associations. The T-allele was associated with higher CVD and mortality risk in women but not in men (P-sex interaction:0.005 and 0.032, respectively), mainly in the MedDiet group. However, milk intake was not associated with CVD biomarkers, CVD or mortality either generally or in sub-groups. Although MCM6-rs3754686 is a good milk intake proxy in these populations, attributing its associations with CVD and mortality in Mediterranean women to milk is unwarranted, as other factors limiting the assumption of causality in Mendelian randomization may exist.

Quality of life and costs in Parkinson's disease: a cross sectional study in Hungary.

PubMed

Tamás, Gertrúd; Gulácsi, László; Bereczki, Dániel; Baji, Petra; Takáts, Annamária; Brodszky, Valentin; Péntek, Márta

2014-01-01

Patient reported outcomes and costs of illness are useful to capture some of the multiple effects of a disease and its treatments. Our aim was to assess quality of life (QoL) and costs of Parkinson's disease (PD) in Hungary, and to analyze their associations. A cross-sectional questionnaire survey was conducted in one neurology university clinic. Clinical characteristics, PD related resource utilizations and productivity loss in the past 12 months were recorded; the Hoehn&Yahr (HY) scale, PDQ-39 and EQ-5D questionnaires were applied. Cost calculation was performed from the societal perspective. 110 patients (34.5% female) were involved with mean age of 63.3 (SD=11.3) and disease duration of 8.2 (SD=5.8) years. PDQ-39 summary score was 48.1 (SD=13.4). The average EQ-5D score was 0.59 (SD=0.28), and was significantly lower than the population norm in age-groups 45-74. The correlation was significant between EQ-5D and PDQ-39 (-0.47, p=0.000), the HY scale and EQ-5D (-0.3416, p=0.0008) and PDQ-39 (0.3419, p=0.0006) scores. The total mean cost was €6030.2 (SD=6163.0)/patient/year (direct medical 35.7%, direct non-medical 29.4%, indirect cost 34.9%). A one year increase in disease duration and 0.1 decrease of the EQ-5D utility score increase the yearly costs by 8 to 10%, and 7.8%, respectively. The effect of the PDQ-39 score on total cost was not significant. Disease severity and public health importance of PD are clearly demonstrated by the magnitude of QoL loss. PD-related costs are substantial, but are much lower in Hungary than in Western European countries. Disease duration and EQ-5D score are significant proxy of costs.

The Chinese version of the Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Asthma Module: reliability and validity.

PubMed

Feng, Lifen; Zhang, Yingfen; Chen, Ruoqing; Hao, Yuantao

2011-08-07

Health-related quality of life (HRQOL) has been recognized as an important health outcome measurement for pediatric patients. One of the most promising instruments in measuring pediatric HRQOL emerged in recent years is the Pediatric Quality of Life Inventory (PedsQL™). The PedsQL™ 3.0 Asthma Module, one of the PedsQL™disease-specific scales, was designed to measure HRQOL dimensions specifically tailored for pediatric asthma. The present study is aimed to evaluate the psychometric properties of the Chinese version of the PedsQL™ 3.0 Asthma Module. The PedsQL™ 3.0 Asthma Module was translated into Chinese following the PedsQL™ Measurement Model Translation Methodology. The Chinese version scale was administered to 204 children with asthma and 337 parents of children with asthma from four Triple A hospitals. The psychometric properties were then evaluated. The percentage of missing value for each item of the scale ranged from 0.00% to 8.31%. All child self-report subscales and parent proxy-report subscales approached or exceeded the minimum reliability standard of 0.70 for alpha coefficient, except 3 subscales of Young Child (aged 5-7) self-report (alphas ranging from 0.59 to 0.68). Test-retest reliability was satisfactory with intraclass correlation coefficients (ICCs) which exceeded the recommended standard of 0.80 in all subscales. Correlation coefficients between items and their hypothesized subscales were higher than those with other subscales. The PedsQL™ 3.0 Asthma Module distinguished between outpatients and inpatients. Patients with mild asthma reported higher scores than those with moderate/severe asthma in majority of subscales. The intercorrelations among the PedsQL™ 3.0 Asthma Module subscales and the PedsQL™ 4.0 Generic Core Scales were in medium to large effect size. The child self-report scores were consistent with the parent proxy-report scores. The Chinese version of the PedsQL™ 3.0 Asthma Module has acceptable psychometric properties, except the internal consistency reliability for Young Child (aged 5-7) self-report. Further studies should be focused on testing responsiveness of the Chinese version scale in longitudinal studies, evaluating the reliability and validity of the scale for the patients with severe asthma or teens independently, and assessing HRQOL of children with asthma in other areas.

Pediatric Eosinophilic Esophagitis Symptom Scores (PEESS® v2.0) identify histologic and molecular correlates of the key clinical features of disease

PubMed Central

Martin, Lisa J.; Franciosi, James P.; Collins, Margaret H.; Abonia, J. Pablo; Lee, James J.; Hommel, Kevin A.; Varni, James W.; Grotjan, J. Tommie; Eby, Michael; He, Hua; Marsolo, Keith; Putnam, Philip E.; Garza, Jose M.; Kaul, Ajay; Wen, Ting; Rothenberg, Marc E.

2015-01-01

Background The Pediatric Eosinophilic Esophagitis Symptom Score (PEESS® v2.0) measures patient-relevant outcomes. However, whether patient-identified domains (dysphagia, gastrointestinal reflux disease (GERD), nausea/vomiting, and pain) align with clinical symptomology and histopathologic and molecular features of eosinophilic esophagitis (EoE) is unclear. Objective The purpose of this study was to determine if clinical features of EoE, measured through the PEESS® v2.0, associate with histopathologic and molecular features of EoE. This represents a novel approach for analysis of allergic diseases, given the availability of allergic tissue biopsy specimens. Methods We systematically recruited treated and untreated, pediatric patients with EoE (aged 2–18 years) and examined parent proxy–reported symptoms using the PEESS® v2.0. Clinical symptomology was collected by questionnaire. Esophageal biopsy samples were quantified for levels of eosinophils, eosinophil peroxidase (EPX) immunohistochemical staining, and mast cells. Molecular features were assessed by the EoE Diagnostic Panel (94 EoE-related gene transcripts). Associations between domain scores and clinical symptoms and biologic features were analyzed using Wilcoxon Rank Sum and Spearman correlation. Results The PEESS® v2.0 domains correlated to specific parent-reported symptoms: dysphagia (p = 0.0012), GERD (p = 0.0001), and nausea/vomiting (p < 0.0001). Pain correlated with multiple symptoms (p < 0.0005). Dysphagia correlated most strongly with overall histopathology, particularly in the proximal esophagus (p ≤ 0.0049). Markers of esophageal activity (EPX) were significantly associated with dysphagia (strongest r = .37; p = 0.02). Eosinophil levels were more associated with pain (r = 0.27; p=0.06) than for dysphagia (r = 0.24; p = 0.13). The dysphagia domain correlated the most with esophageal gene transcript levels, predominantly with mast cell–specific genes. Conclusion We have 1) established a validated, parent proxy–report measure for pediatric EoE — the PEESS® v2.0; 2) verified that parent-proxy effectively captures symptoms; 3) determined that the dysphagia domain most closely aligns with symptoms and tissue-based molecular biomarkers; 4) established that symptoms correlate EPX staining; and 5) observed association between mast cells and dysphagia. PMID:26051952

Agreement Between Responses From Community-Dwelling Persons With Stroke and Their Proxies on the NIH Neurological Quality of Life (Neuro-QoL) Short Forms.

PubMed

Kozlowski, Allan J; Singh, Ritika; Victorson, David; Miskovic, Ana; Lai, Jin-Shei; Harvey, Richard L; Cella, David; Heinemann, Allen W

2015-11-01

To examine agreement between patient and proxy responses on the Quality of Life in Neurological Disorders (Neuro-QoL) instruments after stroke. Cross-sectional observational substudy of the longitudinal, multisite, multicondition Neuro-QoL validation study. In-person, interview-guided, patient-reported outcomes. Convenience sample of dyads (N=86) of community-dwelling persons with stroke and their proxy respondents. Not applicable. Dyads concurrently completed short forms of 8 or 9 items for the 13 Neuro-QoL adult domains using the patient-proxy perspective. Agreement was examined at the scale-level with difference scores, intraclass correlation coefficients (ICCs), effect size statistics, and Bland-Altman plots, and at the item-level with kappa coefficients. We found no mean differences between patients and proxies on the Applied Cognition-General Concerns, Depression, Satisfaction With Social Roles and Activities, Stigma, and Upper Extremity Function (Fine Motor, activities of daily living) short forms. Patients rated themselves more favorably on the Applied Cognition-Executive Function, Ability to Participate in Social Roles and Activities, Lower Extremity Function (Mobility), Positive Affect and Well-Being, Anxiety, Emotional and Behavioral Dyscontrol, and Fatigue short forms. The largest mean patient-proxy difference observed was 3 T-score points on the Lower Extremity Function (Mobility). ICCs ranged from .34 to .59. However, limits of agreement showed dyad differences exceeding ±20 T-score points, and item-level agreement ranged from not significant to weighted kappa=.34. Proxy responses on Neuro-QoL short forms can complement responses of moderate- to high-functioning community-dwelling persons with stroke and augment group-level analyses, but do not substitute for individual patient ratings. Validation is needed for other stroke populations. Copyright © 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Reliability and validity of the Thai version of the Pediatric Quality of Life Inventory 4.0.

PubMed

Sritipsukho, Paskorn; Wisai, Matoorada; Thavorncharoensap, Montarat

2013-04-01

The study aimed to evaluate the reliability and validity of the Thai version of the Pediatric Quality of Life Inventory™ 4.0 Core Scales (PedsQL) as a measure of health-related quality of life (HRQOL). The PedsQL items were completed by 2,086 pupils aged 8-15 years and 1,914 parents from four schools, and 100 pediatric outpatients and 100 parents from a University Hospital. Test-retest reliability was conducted in a randomly selected of 150 pupils at a 1-month interval. Internal consistency reliability for the Total Scale score (α = 0.84 self-report, 0.88 proxy-report), Physical Health Summary score (α = 0.76 self-report, 0.79 proxy-report), and Psychosocial Health Summary score (α = 0.74 self-report, 0.85 proxy-report) exceeded the minimum reliability standard of 0.70. School children had significantly higher mean HRQOL scores compared to those with chronic health conditions for all subscales with the mean differences of 3.1-12.4 for self-report (p < 0.03) and 7.7-15.6 for proxy-report (p < 0.001). Test-retest reliability showed intraclass correlation coefficients above 0.60 in all subscales (p < 0.001). The Thai version of PedsQL had adequate reliability and validity and could be used as an outcome measure of HRQOL in Thai children aged 8-15 years.

Parent-reported health-related quality of life of children with Down syndrome: a descriptive study.

PubMed

Shields, Nora; Leonard, Helen; Munteanu, Shannon; Bourke, Jennifer; Lim, Polly; Taylor, Nicholas F; Downs, Jenny

2018-04-01

To describe health-related quality of life of Australian children and adolescents with Down syndrome and compare it with norm-referenced data. A cross-sectional survey was conducted with parents of 75 children and adolescents (43 males, 32 females) with Down syndrome aged 5 to 18 years (mean age 13y 2mo, SD 4y 8mo). The proxy-report KIDSCREEN-27 questionnaire was administered and five dimensions of health-related quality of life were measured. Data were analysed descriptively and compared with normative data. Total group mean scores for psychological well-being, autonomy and parent relation, and school environment dimensions were within normal threshold values, whereas mean scores for physical well-being, and social support and peers dimensions, were poorer. For participants with Down syndrome aged 8 to 18 years, the difference with normative data for proxy-reported physical well-being, psychological well-being, and social support and peers dimensions favoured typically developing children. Adolescents (13-18y) with Down syndrome scored poorer on all dimensions than children (5-12y) with Down syndrome. Our findings assist a better understanding of the lived experiences of children and adolescents with Down syndrome, as perceived by their parents, and suggest aspects of health that could be influenced to optimize their quality of life. Proxy-reported psychological well-being and autonomy were within the normal range for children with Down syndrome. Physical well-being and social support scores were significantly lower than normative data. Proxy-reported scores for adolescents with Down syndrome were consistently poorer than for children with Down syndrome and the differences were clinically important. © 2018 Mac Keith Press.

Psychometric evaluation and wording effects on the Chinese version of the parent-proxy Kid-KINDL.

PubMed

Lee, Chih-Ting; Lin, Chung-Ying; Tsai, Meng-Che; Strong, Carol; Lin, Yi-Ching

2016-09-05

The pediatric quality of life (QoL) questionnaire, the child-rated Kid-KINDL, has wording effects. However, no studies have examined for its parallel questionnaire, the parent-proxy Kid-KINDL. This study aimed to examine the psychometric properties and wording effects of the parent-proxy Kid-KINDL. Parents with 8- to 12-year-old children (n = 247) completed the parent-proxy Kid-KINDL, 83 of them completed it again 7-14 days later, and 241 of their children completed the child-rated Kid-KINDL. Internal consistency was examined using Cronbach's α; test-retest reliability and concurrent validity, using Pearson correlation coefficients (r); construct validity and wording effects, using confirmatory factor analyses (CFAs). The internal consistency of the parent-proxy Kid-KINDL total score was acceptable (α = .86). Test-retest reliability (r = .33-.60) and concurrent validity (r = .27-.42) were acceptable or nearly acceptable for all subscales and the total score. The CFA models simultaneously accounting for QoL traits and wording effects had satisfactory fit indices, and outperformed the model accounting only for QoL traits. However, four subscales had unsatisfactory internal consistency, which might be attributable to wording effects. When children are unable to complete a QoL questionnaire, the parent-proxy Kid-KINDL can substitute with all due cautions to wording effects and inconsistent reliability among different raters.

Finding a Needle in a Climate Haystack

NASA Astrophysics Data System (ADS)

Verosub, K. L.; Medrano, R.; Valentine, M.

2014-12-01

We are studying the regional impact of volcanic eruptions that might have caused global cooling using high-quality annual-resolution proxy records of natural phenomena, such as tree-ring widths, and cultural events, such as the dates of the beginning of grape and rye harvests. To do this we need to determine if the year following an eruption was significantly colder and wetter than preceding or subsequent years as measured by any given proxy and if that year is consistently cold and wet across different proxies. The problem is complicated by the fact that normal inter-annual variations in any given proxy can be quite large and can obscure any volcanological impact and by the fact that inter-annual variations for different proxies will have different means and standard deviations. We address the first problem by assuming that on a regional scale, the inter-annual variations of different proxies are at best only weakly correlated and that, in the absence of a volcanological signal, these variations will average out on a regional scale. We address the second problem by renormalizing each record so that it has the same mean and standard deviation over a given time interval. We then sum the re-normalized records on a year-by-year basis and look for years with significantly higher total scores. The method can also be used to assess the statistical significance of an anomalous value. Our initial analysis of records primarily from the Northern Hemisphere shows that the years 1601 and 1816 were significantly colder and wetter than any others in the past 500 years. These years followed the eruptions of Huayanaputina in Chile and Tambora in Indonesia, respectively, by one year. The years 1698 and 1837 also show up as being climatologically severe although they have not (yet) been associated with specific volcanic eruptions.

Fatigue in young survivors of extracranial childhood cancer: a Finnish nationwide survey.

PubMed

Mört, Susanna; Lähteenmäki, Päivi M; Matomäki, Jaakko; Salmi, Toivo T; Salanterä, Sanna

2011-11-01

To evaluate self-reports of fatigue by young cancer survivors (aged 11-18 years), to compare young survivors' fatigue scores with the scores of a healthy control group and of the parent proxy evaluation, and to analyze whether demographic or disease-related factors are associated with young survivors' fatigue. Cross-sectional quantitative study. An urban hospital in southwestern Finland. 384 survivors diagnosed with an extracranial malignancy at age 16 or younger, who have survived four or more years postdiagnosis, and who are free of cancer. General matched population controls were randomly selected from the Finnish Population Registry. Demographic data and a self-report written fatigue questionnaire. Total fatigue (TF), general fatigue (GF), sleep or rest fatigue (SF), and cognitive fatigue. The control populations reported significantly more issues with TF, GF, and SF than did the survivor population. In survivors, older age, the need for remedial education at school, and a sarcoma diagnosis were associated with increasing fatigue, whereas female gender, better school grades, and greater health-related quality-of-life (HRQOL) scores were associated with lower fatigue. The study variables explained 49%-65% of the variation in fatigue scores. Although survivors and their matched controls seem to have similar fatigue, subgroups of survivors do experience excessive fatigue, which may have an impact on their HRQOL. This study increases the knowledge about fatigue levels of young survivors of extracranial malignancies and identifies the need for instruments specifically designed to assess fatigue in this population. The healthcare team should pay attention to the fatigue level of young survivors, particularly SF.

Improving long-term prediction of first cardiovascular event: the contribution of family history of coronary heart disease and social status.

PubMed

Veronesi, G; Gianfagna, F; Giampaoli, S; Chambless, L E; Mancia, G; Cesana, G; Ferrario, M M

2014-07-01

The aim of this study is to assess whether family history of coronary heart disease (CHD) and education as proxy of social status improve long-term cardiovascular disease risk prediction in a low-incidence European population. The 20-year risk of first coronary or ischemic stroke events was estimated using sex-specific Cox models in 3956 participants of three population-based surveys in northern Italy, aged 35-69 years and free of cardiovascular disease at enrollment. The additional contribution of education and positive family history of CHD was defined as change in discrimination and Net Reclassification Improvement (NRI) over the model including 7 traditional risk factors. Kaplan-Meier 20-year risk was 16.8% in men (254 events) and 6.4% in women (102 events). Low education (hazard ratio=1.35, 95%CI 0.98-1.85) and family history of CHD (1.55; 1.19-2.03) were associated with the endpoint in men, but not in women. In men, the addition of education and family history significantly improved discrimination by 1%; NRI was 6% (95%CI: 0.2%-15.2%), raising to 20% (0.5%-44%) in those at intermediate risk. NRI in women at intermediate risk was 7%. In low-incidence populations, family history of CHD and education, easily assessed in clinical practice, should be included in long-term cardiovascular disease risk scores, at least in men. Copyright © 2014 Elsevier Inc. All rights reserved.

Challenge of assessing symptoms in seriously ill intensive care unit patients: can proxy reporters help?

PubMed

Puntillo, Kathleen A; Neuhaus, John; Arai, Shoshana; Paul, Steven M; Gropper, Michael A; Cohen, Neal H; Miaskowski, Christine

2012-10-01

Determine levels of agreement among intensive care unit patients and their family members, nurses, and physicians (proxies) regarding patients' symptoms and compare levels of mean intensity (i.e., the magnitude of a symptom sensation) and distress (i.e., the degree of emotionality that a symptom engenders) of symptoms among patients and proxy reporters. Prospective study of proxy reporters of symptoms in seriously ill patients. Two intensive care units in a tertiary medical center in the Western United States. Two hundred and forty-five intensive care unit patients, 243 family members, 103 nurses, and 92 physicians. None. On the basis of the magnitude of intraclass correlation coefficients, where coefficients from .35 to .78 are considered to be appropriately robust, correlation coefficients between patients' and family members' ratings met this criterion (≥.35) for intensity in six of ten symptoms. No intensity ratings between patients and nurses had intraclass correlation coefficients >.32. Three symptoms had intensity correlation coefficients of ≥.36 between patients' and physicians' ratings. Correlation coefficients between patients and family members were >.40 for five symptom-distress ratings. No symptoms had distress correlation coefficients of ≥.28 between patients' and nurses' ratings. Two symptoms had symptom-distress correlation coefficients between patients' and physicians' ratings at >.39. Family members, nurses, and physicians reported higher symptom-intensity scores than patients did for 80%, 60%, and 60% of the symptoms, respectively. Family members, nurses, and physicians reported higher symptom-distress scores than patients did for 90%, 70%, and 80% of the symptoms, respectively. Patient-family intraclass correlation coefficients were sufficiently close for us to consider using family members to help assess intensive care unit patients' symptoms. Relatively low intraclass correlation coefficients between intensive care unit clinicians' and patients' symptom ratings indicate that some proxy raters overestimate whereas others underestimate patients' symptoms. Proxy overestimation of patients' symptom scores warrants further study because this may influence decisions about treating patients' symptoms.

The validity of proxy-based data on loneliness in suicide research: a case-control psychological autopsy study in rural China.

PubMed

Niu, Lu; Jia, Cunxian; Ma, Zhenyu; Wang, Guojun; Yu, Zhenjun; Zhou, Liang

2018-05-01

There is a lack of evidence for the role of loneliness on suicide using psychological autopsy method, and the validity of proxy informants' reports on loneliness is not well established. This study aimed to investigate the validity of proxy respondent reports on loneliness, and the reliability and validity of the University of California Los Angeles Loneliness Scale-6 (ULS-6) as used in psychological autopsy method with rural elderly people in China. Two hundred forty-two suicide cases and 242 normal community controls were selected, and the psychological autopsy method was utilized to collect information. Data from proxy respondents of the living controls were compared with data reported by the targets (gold standards). Subject-proxy concordance for ULS-6 was fair (ICC = 0.447) in the living controls. The suicide cases were more likely to have a higher score of ULS-6 than the living controls. Additionally, our data supported that ULS-6 had adequate psychometric properties in both suicide and control groups: factor analyses yielded one-factor component solution; Cronbach's alpha (both > 0.90) demonstrated excellent internal consistency; the Spearman correlation analysis indicated that the ULS-6 score was positively correlated with depression; and negatively correlated with QOL and social support. Results support proxy-based data on loneliness in research of suicide in older adults in rural China, and the ULS-6 is a psychometrically sound instrument for measuring loneliness in psychological autopsy studies.

Associations of the MCM6-rs3754686 proxy for milk intake in Mediterranean and American populations with cardiovascular biomarkers, disease and mortality: Mendelian randomization

USDA-ARS?s Scientific Manuscript database

Controversy persists on the association between dairy products, especially milk, and cardiovascular diseases (CVD). Genetic proxies may improve dairy intake estimations, and clarify diet- disease relationships through Mendelian randomization. We meta- analytically (n

Initial validation of the Argentinean Spanish version of the PedsQL™ 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settings

PubMed Central

Roizen, Mariana; Rodríguez, Susana; Bauer, Gabriela; Medin, Gabriela; Bevilacqua, Silvina; Varni, James W; Dussel, Veronica

2008-01-01

Background To validate the Argentinean Spanish version of the PedsQL™ 4.0 Generic Core Scales in Argentinean children and adolescents with chronic conditions and to assess the impact of socio-demographic characteristics on the instrument's comprehensibility and acceptability. Reliability, and known-groups, and convergent validity were tested. Methods Consecutive sample of 287 children with chronic conditions and 105 healthy children, ages 2–18, and their parents. Chronically ill children were: (1) attending outpatient clinics and (2) had one of the following diagnoses: stem cell transplant, chronic obstructive pulmonary disease, HIV/AIDS, cancer, end stage renal disease, complex congenital cardiopathy. Patients and adult proxies completed the PedsQL™ 4.0 and an overall health status assessment. Physicians were asked to rate degree of health status impairment. Results The PedsQL™ 4.0 was feasible (only 9 children, all 5 to 7 year-olds, could not complete the instrument), easy to administer, completed without, or with minimal, help by most children and parents, and required a brief administration time (average 5–6 minutes). People living below the poverty line and/or low literacy needed more help to complete the instrument. Cronbach Alpha's internal consistency values for the total and subscale scores exceeded 0.70 for self-reports of children over 8 years-old and parent-reports of children over 5 years of age. Reliability of proxy-reports of 2–4 year-olds was low but improved when school items were excluded. Internal consistency for 5–7 year-olds was low (α range = 0.28–0.76). Construct validity was good. Child self-report and parent proxy-report PedsQL™ 4.0 scores were moderately but significantly correlated (ρ = 0.39, p < 0.0001) and both significantly correlated with physician's assessment of health impairment and with child self-reported overall health status. The PedsQL™ 4.0 discriminated between healthy and chronically ill children (72.72 and 66.87, for healthy and ill children, respectively, p = 0.01), between different chronic health conditions, and children from lower socioeconomic status. Conclusion Results suggest that the Argentinean Spanish PedsQL™ 4.0 is suitable for research purposes in the public health setting for children over 8 years old and parents of children over 5 years old. People with low income and low literacy need help to complete the instrument. Steps to expand the use of the Argentinean Spanish PedsQL™ 4.0 include an alternative approach to scoring for the 2–4 year-olds, further understanding of how to increase reliability for the 5–7 year-olds self-report, and confirmation of other aspects of validity. PMID:18687134

Initial validation of the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settings.

PubMed

Roizen, Mariana; Rodríguez, Susana; Bauer, Gabriela; Medin, Gabriela; Bevilacqua, Silvina; Varni, James W; Dussel, Veronica

2008-08-07

To validate the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in Argentinean children and adolescents with chronic conditions and to assess the impact of socio-demographic characteristics on the instrument's comprehensibility and acceptability. Reliability, and known-groups, and convergent validity were tested. Consecutive sample of 287 children with chronic conditions and 105 healthy children, ages 2-18, and their parents. Chronically ill children were: (1) attending outpatient clinics and (2) had one of the following diagnoses: stem cell transplant, chronic obstructive pulmonary disease, HIV/AIDS, cancer, end stage renal disease, complex congenital cardiopathy. Patients and adult proxies completed the PedsQL 4.0 and an overall health status assessment. Physicians were asked to rate degree of health status impairment. The PedsQL 4.0 was feasible (only 9 children, all 5 to 7 year-olds, could not complete the instrument), easy to administer, completed without, or with minimal, help by most children and parents, and required a brief administration time (average 5-6 minutes). People living below the poverty line and/or low literacy needed more help to complete the instrument. Cronbach Alpha's internal consistency values for the total and subscale scores exceeded 0.70 for self-reports of children over 8 years-old and parent-reports of children over 5 years of age. Reliability of proxy-reports of 2-4 year-olds was low but improved when school items were excluded. Internal consistency for 5-7 year-olds was low (alpha range = 0.28-0.76). Construct validity was good. Child self-report and parent proxy-report PedsQL 4.0 scores were moderately but significantly correlated (rho = 0.39, p < 0.0001) and both significantly correlated with physician's assessment of health impairment and with child self-reported overall health status. The PedsQL 4.0 discriminated between healthy and chronically ill children (72.72 and 66.87, for healthy and ill children, respectively, p = 0.01), between different chronic health conditions, and children from lower socioeconomic status. Results suggest that the Argentinean Spanish PedsQL 4.0 is suitable for research purposes in the public health setting for children over 8 years old and parents of children over 5 years old. People with low income and low literacy need help to complete the instrument. Steps to expand the use of the Argentinean Spanish PedsQL 4.0 include an alternative approach to scoring for the 2-4 year-olds, further understanding of how to increase reliability for the 5-7 year-olds self-report, and confirmation of other aspects of validity.

Cardiovascular risk scores for coronary atherosclerosis.

PubMed

Yalcin, Murat; Kardesoglu, Ejder; Aparci, Mustafa; Isilak, Zafer; Uz, Omer; Yiginer, Omer; Ozmen, Namik; Cingozbay, Bekir Yilmaz; Uzun, Mehmet; Cebeci, Bekir Sitki

2012-10-01

The objective of this study was to compare frequently used cardiovascular risk scores in predicting the presence of coronary artery disease (CAD) and 3-vessel disease. In 350 consecutive patients (218 men and 132 women) who underwent coronary angiography, the cardiovascular risk level was determined using the Framingham Risk Score (FRS), the Modified Framingham Risk Score (MFRS), the Prospective Cardiovascular Münster (PROCAM) score, and the Systematic Coronary Risk Evaluation (SCORE). The area under the curve for receiver operating characteristic curves showed that FRS had more predictive value than the other scores for CAD (area under curve, 0.76, P < or = 0.001), but all scores had good specificity and positive predictive value. For 3-vessel disease, the FRS had better predictive value than the other scores (area under curve, 0.74, P < or = 0.001), but all scores had good specificity and negative predictive value. The risk scores (FRS, MFRS, PROCAM, and SCORE) may predict the presence and severity of coronary atherosclerosis.The FRS had better predictive value than the other scores.

Bayesian estimation of the accuracy of the calf respiratory scoring chart and ultrasonography for the diagnosis of bovine respiratory disease in pre-weaned dairy calves.

PubMed

Buczinski, Sébastien; L Ollivett, Terri; Dendukuri, Nandini

2015-05-01

There is currently no gold standard method for the diagnosis of bovine respiratory disease (BRD) complex in Holstein pre-weaned dairy calves. Systematic thoracic ultrasonography (TUS) has been used as a proxy for BRD, but cannot be directly used by producers. The Wisconsin calf respiratory scoring chart (CRSC) is a simpler alternative, but with unknown accuracy. Our objective was to estimate the accuracy of CRSC, while adjusting for the lack of a gold standard. Two cross sectional study populations with a high BRD prevalence (n=106 pre-weaned Holstein calves) and an average BRD prevalence (n=85 pre-weaned Holstein calves) from North America were studied. All calves were simultaneously assessed using CRSC (cutoff used ≥ 5) and TUS (cutoff used ≥ 1cm of lung consolidation). Bayesian latent class models allowing for conditional dependence were used with informative priors for BRD prevalence and TUS accuracy (sensitivity (Se) and specificity (Sp)) and non-informative priors for CRSC accuracies. Robustness of the model was tested by relaxing priors for prevalence or TUS accuracy. The SeCRSC (95% credible interval (CI)) and SpCRSC were 62.4% (47.9-75.8) and 74.1% (64.9-82.8) respectively. The SeTUS was 79.4% (66.4-90.9) and SpTUS was 93.9% (88.0-97.6). The imperfect accuracy of CRSC and TUS should be taken into account when using those tools to assess BRD status. Copyright © 2015 Elsevier B.V. All rights reserved.

Comparison of disease-specific quality of life tools in patients with chronic venous disease.

PubMed

Kuet, Mong-Loon; Lane, Tristan Ra; Anwar, Muzaffar A; Davies, Alun H

2014-12-01

This work was presented as a poster in the American Venous Forum 25th Annual Meeting; 28 February 2013; Phoenix, Arizona, USA. Quality of life (QoL) is an important outcome measure in the treatment for chronic venous disease. The Aberdeen Varicose Vein Questionnaire (AVVQ) and the ChronIc Venous Insufficiency quality of life Questionnaire (CIVIQ-14) are two validated disease-specific QoL questionnaires in current use. The aim of this study is to evaluate the relationship between the AVVQ and the CIVIQ-14 to enable better comparison between studies and to compare these disease-specific QoL tools with generic QoL and clinician-driven tools. Adults attending our institution for management of their varicose veins completed the AVVQ, CIVIQ-14 and EuroQol-5D (EQ-5D). Clinical data, CEAP classification and the Venous Clinical Severity Score (VCSS) were collected. The relationship between the AVVQ and CIVIQ-14 scores was analysed using Spearman's correlation. The AVVQ and CIVIQ-14 scores were also analysed with a generic QoL tool (EQ-5D) and a clinician-driven tool, the VCSS. One hundred patients, mean age 57.5 (44 males; 56 females), participated in the study. The median AVVQ score was 21.9 (range 0-74) and the median CIVIQ-14 score was 30 (range 0-89). A strong correlation was demonstrated between the AVVQ and CIVIQ-14 scores (r = 0.8; p < 0.0001). Strong correlation was maintained for patients with C1-3 disease (r = 0.7; p < 0.0001) and C4-6 disease (r = 0.8; p < 0.0001). The VCSS correlated strongly with the AVVQ and CIVIQ-14 scores (r = 0.7; p < 0.0001 and r = 0.7; p < 0.0001, respectively). Both the AVVQ and CIVIQ-14 scores correlated well with the EQ-5D score (r = -0.5; p < 0.0001 and r = -0.7; p < 0.0001, respectively). This study demonstrates that there is good correlation between two widely used varicose vein specific QoL tools (AVVQ and CIVIQ-14) across the whole spectrum of disease severity. Strong correlation exists between these disease-specific QoL tools and generic and clinician-driven tools. Our findings confirm valid comparisons between studies using either disease-specific QoL tool. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Post-thrombotic syndrome and venous disease-specific quality of life in patients with vascular Behçet's disease.

PubMed

Alibaz-Oner, Fatma; Aldag, Belgin; Aldag, Mustafa; Unal, A Ugur; Mutiş, Aydan; Toptas, Tayfur; Ergun, Tulin; Direskeneli, Haner

2016-07-01

Deep venous thrombosis (DVT) is the most common form of vascular involvement in Behçet's disease (BD). Chronic post-thrombotic syndrome (PTS) develops in up to one-half of patients with DVT and is associated with impaired quality of life (QoL). There are no data on the severity of DVT-related PTS and its effect on QoL in patients with vascular BD (VBD). We aimed to evaluate PTS and venous disease-specific QoL in patients with VBD. This study included 50 patients (41 men, nine women) with VBD and 31 individuals matched for age and gender (22 men, nine women) with DVT associated with non-BD causes. The Villalta scale was used to assess PTS. The Venous Disability Score and the Venous Clinical Severity Score were used for the assessment of venous disease. Venous disease-specific QoL was measured through Venous Insufficiency Epidemiological and Economic Study Quality of Life/Symptom (VEINES-QoL/Sym) questionnaire. The Behçet Syndrome Activity Score (BSAS) questionnaire was used to assess disease activity. We observed a significantly lower risk of PTS together with significantly better VEINES-QoL/Sym, and Venous Disability Score in the VBD group compared with the non-BD group. When VBD patients with PTS were compared with patients without PTS, VEINES-QoL/Sym, and Venous Clinical Severity Score were significantly worse. BSAS was also significantly higher in patients with PTS. An inverse correlation was found between the VEINES-QoL and the BSAS in multivariate analysis. There were no differences between anticoagulant users and nonusers regarding the presence of PTS and scores of all of the venous assessment tools. We found lower PTS risk and better venous disease-specific QoL, symptom severity, and venous disability scores in VBD patients compared with the non-BD group. Venous disease-specific QoL negatively correlated with disease activity. Effective control of vascular inflammation through treatment in VBD might explain lower rates of PTS and better venous QoL outcomes in VBD patients. Our results suggest that successful control of BD activity might decrease the development of PTS, improve venous disease-specific QoL, and prevent relapses in VBD. Copyright © 2016 Society for Vascular Surgery. Published by Elsevier Inc. All rights reserved.

Proxy assessment of health-related quality of life in african american and white respondents with prostate cancer: perspective matters.

PubMed

Pickard, A Simon; Lin, Hsiang-Wen; Knight, Sara J; Knight, Sara L; Sharifi, Roohollah; Wu, Zhigang; Hung, Shih-Ying; Witt, Whitney P; Chang, Chih-Hung; Bennett, Charles L

2009-02-01

An emerging issue in the proxy literature is whether specifying different proxy viewpoints contributes to different health-related quality of life (HRQL) assessments, and if so, how might each perspective be informative in medical decision making. The aims of this study were to determine if informal caregiver assessments of patients with prostate cancer differed when prompted from both the patient perspective (proxy-patient) and their own viewpoint (proxy-proxy), and to identify factors associated with differences in proxy perspectives (ie, the intraproxy gap). Using a cross-sectional design, prostate cancer patients and their informal caregivers were recruited from urology clinics in the Jesse Brown Veterans Affairs Healthcare System in Chicago. Dyads assessed HRQL using the EQ-5D visual analog scale (VAS) and EORTC QLQ-C30. Of 87 dyads, most caregivers were female (83%) and were spouses/partners (58%). Mean difference scores between proxy-patient and proxy-proxy perspectives were statistically significant for QLQ-C30 physical and emotional functioning, and VAS (all P < 0.05), with the proxy-patient perspective closer to patient self-report. Emotional functioning had the largest difference, mean 6.0 (SD 12.8), an effect size = 0.47. Factors weakly correlated with the intraproxy gap included relationship (spouse) and proxy gender for role functioning, and health literacy (limited/functional) for physical functioning (all P < 0.05, 0.20 < r < 0.35). Meaningful differences between proxy-patient and proxy-proxy perspectives on mental health were consistent with a conceptual framework for understanding proxy perspectives. Prompting different proxy viewpoints on patient health could help clinicians identify patients who may benefit from clinical intervention.

Proxy Assessment of Health-Related Quality of Life in African American and White Respondents With Prostate Cancer

PubMed Central

Pickard, A. Simon; Lin, Hsiang-Wen; Knight, Sara J.; Sharifi, Roohollah; Wu, Zhigang; Hung, Shih-Ying; Witt, Whitney P.; Chang, Chih-Hung; Bennett, Charles L.

2011-01-01

Objectives An emerging issue in the proxy literature is whether specifying different proxy viewpoints contributes to different health-related quality of life (HRQL) assessments, and if so, how might each perspective be informative in medical decision making. The aims of this study were to determine if informal caregiver assessments of patients with prostate cancer differed when prompted from both the patient perspective (proxy-patient) and their own viewpoint (proxy-proxy), and to identify factors associated with differences in proxy perspectives (ie, the intraproxy gap). Research Design and Methods Using a cross-sectional design, prostate cancer patients and their informal caregivers were recruited from urology clinics in the Jesse Brown Veterans Affairs Healthcare System in Chicago. Dyads assessed HRQL using the EQ-5D visual analog scale (VAS) and EORTC QLQ-C30. Results Of 87 dyads, most caregivers were female (83%) and were spouses/partners (58%). Mean difference scores between proxy-patient and proxy-proxy perspectives were statistically significant for QLQ-C30 physical and emotional functioning, and VAS (all P < 0.05), with the proxy-patient perspective closer to patient self-report. Emotional functioning had the largest difference, mean 6.0 (SD 12.8), an effect size = 0.47. Factors weakly correlated with the intraproxy gap included relationship (spouse) and proxy gender for role functioning, and health literacy (limited/functional) for physical functioning (all P < 0.05, 0.20 < r < 0.35). Conclusions Meaningful differences between proxy-patient and proxy-proxy perspectives on mental health were consistent with a conceptual framework for understanding proxy perspectives. Prompting different proxy viewpoints on patient health could help clinicians identify patients who may benefit from clinical intervention. PMID:19169118

Patient-reported Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales in pediatric patients with attention-deficit/hyperactivity disorder and comorbid psychiatric disorders: feasibility, reliability, and validity.

PubMed

Limbers, Christine A; Ripperger-Suhler, Jane; Heffer, Robert W; Varni, James W

2011-06-01

The primary objective of the study was to evaluate the feasibility, reliability, and validity of the Pediatric Quality of Life Inventory™ (PedsQL) 4.0 Generic Core Scales as a patient self-reported health-related quality of life measurement instrument in pediatric patients with attention-deficit/hyperactivity disorder (ADHD) and physician-diagnosed comorbid psychiatric disorders being seen in a pediatric psychiatric clinic. The secondary objective was to evaluate parent proxy-reported PedsQL in this population. One hundred seventy-nine children with ADHD and comorbid psychiatric disorders ages 5 to 18 years and 181 parents completed the PedsQL 4.0 Generic Core Scales and parents also completed the Vanderbilt ADHD Diagnostic Rating Scales. Known-groups discriminant validity comparisons were made between the sample of pediatric patients with ADHD and comorbid psychiatric disorders and healthy, cancer, and type 1 diabetes samples. The PedsQL evidenced minimal missing responses for patient self-report and parent proxy-report (0.2% and 0.5%, respectively), demonstrated no significant floor or ceiling effects, and achieved excellent reliability for the Total Scale Score (α = 0.85 patient self-report, 0.92 parent proxy-report). Pediatric patients with ADHD and comorbid psychiatric disorders and their parents reported statistically significantly worse PedsQL scores than healthy children, with large effect sizes across all domains, supporting known-groups discriminant validity. Pediatric patients with ADHD and comorbid psychiatric disorders and their parents reported worse PedsQL scores compared to pediatric patients with cancer and diabetes with the exception of physical health, in which pediatric cancer patients manifested lower physical health, indicating the relative severe impact of ADHD and comorbid psychiatric disorders. More severe ADHD symptoms were generally associated with more impaired PedsQL scores, supporting construct validity. These data demonstrate the feasibility, reliability, and validity of patient self-reported PedsQL 4.0 Generic Core Scales in this high risk population of pediatric patients and highlight the profound negative impact of ADHD and comorbid psychiatric disorders on generic health-related quality of life, comparable to or worse than serious pediatric chronic physical diseases. Copyright © 2011 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Stability of Mental Toughness, Sleep Disturbances, and Physical Activity in Patients With Multiple Sclerosis (MS)—A Longitudinal and Pilot Study

PubMed Central

Sadeghi Bahmani, Dena; Esmaeili, Leila; Shaygannejad, Vahid; Gerber, Markus; Kesselring, Juerg; Lang, Undine E.; Holsboer-Trachsler, Edith; Brand, Serge

2018-01-01

Background: Previous research of patients with multiple sclerosis (MS) focused prevalently on fatigue, depression, and cognitive dysfunction during the clinical course. By contrast, research on the longer-term characteristics of physical activity (PA), psychological functioning, and sleep problems is scarce. The aims of the present study were therefore to examine changes in PA, mental toughness (MT) as a proxy of psychological functioning, and sleep disturbances over a 2-year period of time after disease onset. Methods: A total of 18 patients with diagnosed MS (mean age: M = 34.29 years) took part in this longitudinal study. First, 1–4 weeks after the first symptoms, a neurologist diagnosed the MS. Second, they completed a series of questionnaires covering socio-demographic data, PA, MT, and sleep disturbances. Third, the same questionnaires were completed again 2 years later (follow-up). Last, a neurologist assessed the degree of disability with the Expanded Disability Status Scale (EDSS). Results: Two years after MS onset, patients had lower levels of vigorous PA, but no statistically significant changes in moderate PA were observed. Further, walking time increased and sedentary time decreased. Patients with sleep disturbances at disease onset also reported poor sleep 2 years later. MT scores remained stable over time. EDSS scores worsened, though, change in EDSS was not associated with PA, MT, or sleep. Conclusions: Two years after disease onset, patients with MS reported similar MT levels and sleep disturbances. PA shifted from vigorous PA toward walking and a less sedentary lifestyle, while moderate PA remained unchanged. The pattern of results of the present pilot study suggests that at the early stage of the MS course, there is no obstacle for being physically active, nor did sleep and MT as a proxy of psychological functioning decrease in a substantial way. PMID:29867606

Japanese scoring systems to predict resistance to intravenous immunoglobulin in Kawasaki disease were unreliable for Caucasian Israeli children.

PubMed

Arane, Karen; Mendelsohn, Kerry; Mimouni, Michael; Mimouni, Francis; Koren, Yael; Simon, Dafna Brik; Bahat, Hilla; Helou, Mona Hanna; Mendelson, Amir; Hezkelo, Nofar; Glatstein, Miguel; Berkun, Yackov; Eisenstein, Eli; Aviel, Yonatan Butbul; Brik, Riva; Hashkes, Philip J; Uziel, Yosef; Harel, Liora; Amarilyo, Gil

2018-05-24

This study assessed the validity of using established Japanese risk scoring methods to predict intravenous immunoglobulin (IVIG) resistance to Kawasaki disease in Israeli children. We reviewed the medical records of 282 patients (70% male) with Kawasaki disease from six Israeli medical centres between 2004-2013. Their mean age was 2.5 years. The risk scores were calculated using the Kobayashi, Sano and Egami scoring methods and analysed to determine if a higher risk score predicted IVIG resistance in this population. Factors that predicted a lack of response to the initial IVIG dose were identified. We found that 18% did not respond to the first IVIG dose. The three scoring methods were unable to reliably predict IVIG resistance, with sensitivities of 23-32% and specificities of 67-87%. Calculating a predictive score that was specific for this population was also unsuccessful. The factors that predicted a lacked of response to the first IVIG dose included low albumin, elevated total bilirubin and ethnicity. The established risk scoring methods created for Japanese populations with Kawasaki disease were not suitable for predicting IVIG resistance in Caucasian Israeli children and we were unable to create a specific scoring method that was able to do this. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Quantifying Proxy Influence in the Last Millennium Reanalysis

NASA Astrophysics Data System (ADS)

Hakim, G. J.; Anderson, D. N.; Emile-Geay, J.; Noone, D.; Tardif, R.

2017-12-01

We examine the influence of proxies in the climate field reconstruction known as the Last Millennium Reanalysis (Hakim et al. 2016; JGR-A). This data assimilation framework uses the CCSM4 Last Millennium simulation as an agnostic prior, proxies from the PAGES 2k Consortium (2017; Sci. Data), and an offline ensemble square-root filter for assimilation. Proxies are forward modeled using an observation model ("proxy system model") that maps from the prior space to the proxy space. We assess proxy impact using the method of Cardinali et al. (2004; QJRMS), where influence is measured in observation space; that is, at the location of observations. Influence is determined by three components: the prior at the location, the proxy at the location, and remote proxies as mediated by the spatial covariance information in the prior. Consequently, on a per-proxy basis, influence is higher for spatially isolated proxies having small error, and influence is lower for spatially dense proxies having large error. Results show that proxy influence depends strongly on the observation model. Assuming the proxies depend linearly on annual mean temperature yields the largest per-proxy influence for coral d18O and coral Sr/Ca records, and smallest influence for tree-ring width. On a global basis (summing over all proxies of a given type), tree-ring width and coral d18O have the largest influence. A seasonal model for the proxies yields very different results. In this case we model the proxies linearly on objectively determined seasonal temperature, except for tree proxies, which are fit to a bivariate model on seasonal temperature and precipitation. In this experiment, on a per-proxy basis, tree-ring density has by far the greatest influence. Total proxy influence is dominated by tree-ring width followed by tree-ring density. Compared to the results for the annual-mean observation model, the experiment where proxies are measured seasonally has more than double the total influence (sum over all proxies); this experiment also has higher verification scores when measured against other 20th century temperature reconstructions. These results underscore the importance of improving proxy system models, since they increase the amount of information available for data-assimilation-based reconstructions.

Health-related quality of life in children with newly diagnosed immune thrombocytopenia

PubMed Central

Heitink-Pollé, Katja M.J.; Haverman, Lotte; Annink, Kim V.; Schep, Sarah J.; de Haas, Masja; Bruin, Marrie C.A.

2014-01-01

Despite its generally transient and benign course, childhood immune thrombocytopenia has a large impact on health-related quality of life. Recently published guidelines state that quality of life should be taken into account while making decisions on management in childhood immune thrombocytopenia. We, therefore, assessed health-related quality of life in children with newly diagnosed immune thrombocytopenia in a prospective multicenter study. One hundred and seven children aged 6 months-16 years (mean age 5.57 years) were included. We used Pediatric Quality of Life Inventory™ and Kids’ ITP Tools questionnaires at diagnosis and during standardized follow-up. Scores on the Pediatric Quality of Life Inventory™ Core Scales were compared with those of healthy children. Relationships between health-related quality of life scores and treatment modality, bleeding tendency and course of the disease were examined. Kids’ ITP Tools proxy reports and parent self-reports showed significant higher health-related quality of life scores in children who recovered than in children with persistent immune thrombocytopenia (at 3 months: Kids’ ITP Tools parent self-report score 80.85 for recovered patients (n=69) versus 58.98 for patients with persistent disease (n=21), P<0.001). No significant differences in health-related quality of life were found between children with mild or moderate bleeding or between children who received intravenous immunoglobulin or children who were carefully observed. In conclusion, health-related quality of life of children with newly diagnosed immune thrombocytopenia is not influenced by treatment modality or bleeding severity, but only by clinical course of the disease. (Dutch Trial Register identifier: NTR TC1563) PMID:24951468

Evaluation of Patient and Proxy Responses on the Activity Measure for Post Acute Care

PubMed Central

Jette, Alan M.; Ni, Pengsheng; Rasch, Elizabeth K.; Appelman, Jed; Sandel, M. Elizabeth; Terdiman, Joseph; Chan, Leighton

2012-01-01

Background and Purpose Our objective was to examine the agreement between adult patients with stroke and family member or clinician proxies in Activity Measure for Post Acute Care (AM-PAC) summary scores for daily activity, basic mobility, and applied cognitive function. Methods This study involved 67 patients with stroke admitted to a hospital within the Kaiser Permanente of Northern California system and were participants in a parent study on stroke outcomes. Each participant and proxy respondent completed the AM-PAC by personal or telephone interview at the point of hospital discharge and/or during one or more transitions to different post-acute care settings. Results The results suggest that for patients with a stroke proxy AM-PAC data are robust for family or clinician proxy assessment of basic mobility function, clinician proxy assessment of daily activity function, but less robust for family proxy assessment of daily activity function and for all proxy groups’ assessment of applied cognitive function. The pattern of disagreement between patient and proxy was, on average, relatively small and random. There was little evidence of systematic bias between proxy and patient reports of their functional status. The degree of concordance between patient and proxy was similar for those with moderate to severe strokes compared with mild strokes. Conclusions Patient and proxy ratings on the AM-PAC achieved adequate agreement for use in stroke research where using proxy respondents could reduce sample selection bias. The AM-PAC data can be implemented across institutional as well as community care settings while achieving precision and reducing respondent burden. PMID:22343646

Validity and responsiveness of the urticaria activity and impact measure (U-AIM), a new patient-reported tool.

PubMed

Maurer, Marcus; Mathias, Susan D; Crosby, Ross D; Rajput, Yamina; Zazzali, James L

2018-03-19

Chronic spontaneous urticaria (CSU), also known as chronic idiopathic urticaria (CIU), may produce hives, itch, and angioedema. The Urticaria Activity and Impact Measure (U-AIM) is a newly developed 9-item patient-reported measure designed for use in routine clinical practice to assess CSU activity and impact over the previous 7 days. To evaluate validity, responsiveness, and clinically meaningful change of the U-AIM. Data from a 24-week open-label single-arm period of a randomized, placebo-controlled study of omalizumab were used to assess the psychometric properties of U-AIM items for itch, hives, and angioedema. 206 patients (75% female, mean age 44.6 years) were enrolled. At baseline, U-AIM results included prevalent severe itch (55%) and >12 hives (67%), angioedema (15%), and bother by itch (84%), hives (84%), and angioedema (49%). Urticaria Patient Daily Diary (UPDD) mean weekly scores were 15.4 (itch severity), 16.8 (number of hives), and 32.2 (Urticaria Activity Score [UAS7]). At baseline, Weeks 12 and 24, U-AIM itch and hives items and UAS7 proxy scores (the sum of itch severity and number of hives over 7 days) demonstrated strong correlation coefficients with their corresponding measures from the UPDD (itch severity: 0.634-0.806; hives number: 0.735-0.843; UAS7 proxy: 0.724-0.852). Changes in U-AIM scores differentiated patients by their perspective of symptom improvement. Meaningful change thresholds were established for itch severity and number of hives scores (0.8-1.0 for both) and the UAS7 proxy score (10.5-12.5). The U-AIM is valid and responsive to change, and may help clinicians monitor CSU activity and track treatment effectiveness. Copyright © 2018. Published by Elsevier Inc.

Quality of Life and its Determinants in a Multi-Center Cohort of Children with Alagille Syndrome

PubMed Central

Kamath, Binita M.; Chen, Zhen; Romero, Rene; Fredericks, Emily M.; Alonso, Estella M.; Arnon, Ronen; Heubi, James; Hertel, Paula M.; Karpen, Saul J.; Loomes, Kathleen M.; Murray, Karen F.; Rosenthal, Philip; Schwarz, Kathleen B.; Subbarao, Girish; Teckman, Jeffrey H.; Turmelle, Yumirle P.; Wang, Kasper S.; Sherker, Averell H.; Sokol, Ronald J.; Magee, John C.

2015-01-01

Objectives To assess health-related quality of life (HRQOL) in children with Alagille syndrome (ALGS) in comparison with healthy and other liver disease cohorts, and to identify determinants of HRQOL in patients with ALGS. Study design Within the Childhood Liver Disease Research Network prospective study of cholestasis, Pediatric Quality of Life Inventory™ (PedsQL) questionnaires were administered to 70 ALGS, 95 alpha-1-antitrypsin deficiency (A1ATD) and 49 children with other causes of chronic intrahepatic cholestasis (IHC) aged 5-18 years. Parent-proxy PedsQL scores were recorded for children aged 2-18 (98 ALGS, 123 A1ATD, 68 IHC). Results Mean ages and total bilirubin (mg/dL) were: ALGS 9.4y; 4.4, A1ATD 9.5y; 0.7, IHC 10.3y; 2.9. ALGS child PedsQL scores were lower than in healthy children and children with A1ATD (mean 73 vs. 83 p=0.001). Children with ALGS and IHC were similar, except in physical scores (73 vs. 79 p=0.05). ALGS parents perceived their children to have worse HRQOL than A1ATD (p<=0.001) and marginally lower compared with IHC. Univariate analysis revealed ALGS child-reported scores were positively associated with better growth and inversely with total bilirubin. Growth failure, elevated INR and an intra-cardiac defect were predictive of poor parental scores (p<=0.05). In multivariate analysis, only weight z-score remained significant for child and parent-reported scores. Conclusions HRQOL is impaired in ALGS compared with healthy and children with A1ATD, similar to IHC and is associated with growth failure, which is a potentially treatable cause of impaired HRQOL. PMID:26059338

Health Related Quality of Life in Children with Nephrotic Syndrome in Bangladesh.

PubMed

Rahman, M; Afroz, S; Ali, R; Hanif, M

2016-10-01

Outcome of children with nephrotic syndrome has continued to improve over time. However minimal data exist to describe health-related quality of life in children with nephrotic syndrome. This cross sectional study was conducted over a period of six months to assess the health related quality of life in children with nephrotic syndrome in the Department of Pediatric Nephrology, Dhaka Medical College Hospital, Bangladesh. Fifty children (age ranged 2-12 years) with nephrotic syndrome who had three or more relapses diagnosed at least one year back receiving treatment and on follow up were included in this study. Quality of Life scores were collected using Bengali translated instruments- the Pediatric Quality of Life Inventory™ (PedsQL™) version 4.0 Generic Scale and the Pediatric Quality of Life Questionnaire for Nephrotic Syndrome proxy-report from parents. Medical data and Demographic data were collected from medical records, and from parents in outpatient department or hospital ward. Interviews of eligible guardians were performed individually to collect quality of life (QoL) scores. Among 50 children, mean±SD age of the children was 7±2.92 years. Most children were male (58%). Female parents respondent during interview were 62%, most parents (48%) were very poor in socioeconomic condition. Most children had frequent relapses (60%). Median time since diagnosis was 2 years. Regarding PedsQL scores, child age with physical summary score (p value <0.001), child age with social summary score (p value 0.003), frequent relapse with kidney disease summary score (p value 0.04) and time since diagnosis (p value <0.001) were statistically significant. In conclusion physical and social summary score were worst. Frequent relapse found to be an important factor in impaired QoL. Prolonged duration of the disease activity was associated with significant impairment of QoL.

An examination of periodontal treatment and per member per month (PMPM) medical costs in an insured population

PubMed Central

Albert, David A; Sadowsky, Donald; Papapanou, Panos; Conicella, Mary L; Ward, Angela

2006-01-01

Background Chronic medical conditions have been associated with periodontal disease. This study examined if periodontal treatment can contribute to changes in overall risk and medical expenditures for three chronic conditions [Diabetes Mellitus (DM), Coronary Artery Disease (CAD), and Cerebrovascular Disease (CVD)]. Methods 116,306 enrollees participating in a preferred provider organization (PPO) insurance plan with continuous dental and medical coverage between January 1, 2001 and December 30, 2002, exhibiting one of three chronic conditions (DM, CAD, or CVD) were examined. This study was a population-based retrospective cohort study. Aggregate costs for medical services were used as a proxy for overall disease burden. The cost for medical care was measured in Per Member Per Month (PMPM) dollars by aggregating all medical expenditures by diagnoses that corresponded to the International Classification of Diseases, 9th Edition, (ICD-9) codebook. To control for differences in the overall disease burden of each group, a previously calculated retrospective risk score utilizing Symmetry Health Data Systems, Inc. Episode Risk Groups™ (ERGs) were utilized for DM, CAD or CVD diagnosis groups within distinct dental services groups including; periodontal treatment (periodontitis or gingivitis), dental maintenance services (DMS), other dental services, or to a no dental services group. The differences between group means were tested for statistical significance using log-transformed values of the individual total paid amounts. Results The DM, CAD and CVD condition groups who received periodontitis treatment incurred significantly higher PMPM medical costs than enrollees who received gingivitis treatment, DMS, other dental services, or no dental services (p < .001). DM, CAD, and CVD condition groups who received periodontitis treatment had significantly lower retrospective risk scores (ERGs) than enrollees who received gingivitis treatment, DMS, other dental services, or no dental services (p < .001). Conclusion This two-year retrospective examination of a large insurance company database revealed a possible association between periodontal treatment and PMPM medical costs. The findings suggest that periodontitis treatment (a proxy for the presence of periodontitis) has an impact on the PMPM medical costs for the three chronic conditions (DM, CAD, and CVD). Additional studies are indicated to examine if this relationship is maintained after adjusting for confounding factors such as smoking and SES. PMID:16914052

Cortical Thickness Correlates of Specific Cognitive Performance Accounted for by the General Factor of Intelligence in Healthy Children Aged 6 to 18

PubMed Central

Karama, Sherif; Colom, Roberto; Johnson, Wendy; Deary, Ian J.; Haier, Richard; Waber, Deborah P.; Lepage, Claude; Ganjavi, Hooman; Jung, Rex; Evans, Alan C.

2011-01-01

Prevailing psychometric theories of intelligence posit that individual differences in cognitive performance are attributable to three main sources of variance: the general factor of intelligence (g), cognitive ability domains, and specific test requirements and idiosyncrasies. Cortical thickness has been previously associated with g. In the present study, we systematically analyzed associations between cortical thickness and cognitive performance with and without adjusting for the effects of g in a representative sample of children and adolescents (N = 207, Mean age = 11.8; SD = 3.5; Range = 6 to 18.3 years). Seven cognitive tests were included in a measurement model that identified three first-order factors (representing cognitive ability domains) and one second-order factor representing g. Residuals of the cognitive ability domain scores were computed to represent g-independent variance for the three domains and seven tests. Cognitive domain and individual test scores as well as residualized scores were regressed against cortical thickness, adjusting for age, gender and a proxy measure of brain volume. g and cognitive domain scores were positively correlated with cortical thickness in very similar areas across the brain. Adjusting for the effects of g eliminated associations of domain and test scores with cortical thickness. Within a psychometric framework, cortical thickness correlates of cognitive performance on complex tasks are well captured by g in this demographically representative sample. PMID:21241809

Common genetic variants associated with cognitive performance identified using the proxy-phenotype method

PubMed Central

Rietveld, Cornelius A.; Esko, Tõnu; Davies, Gail; Pers, Tune H.; Turley, Patrick; Benyamin, Beben; Chabris, Christopher F.; Emilsson, Valur; Johnson, Andrew D.; Lee, James J.; de Leeuw, Christiaan; Marioni, Riccardo E.; Medland, Sarah E.; Miller, Michael B.; Rostapshova, Olga; van der Lee, Sven J.; Vinkhuyzen, Anna A. E.; Amin, Najaf; Conley, Dalton; Derringer, Jaime; van Duijn, Cornelia M.; Fehrmann, Rudolf; Franke, Lude; Glaeser, Edward L.; Hansell, Narelle K.; Hayward, Caroline; Iacono, William G.; Ibrahim-Verbaas, Carla; Jaddoe, Vincent; Karjalainen, Juha; Laibson, David; Lichtenstein, Paul; Liewald, David C.; Magnusson, Patrik K. E.; Martin, Nicholas G.; McGue, Matt; McMahon, George; Pedersen, Nancy L.; Pinker, Steven; Porteous, David J.; Posthuma, Danielle; Rivadeneira, Fernando; Smith, Blair H.; Starr, John M.; Tiemeier, Henning; Timpson, Nicholas J.; Trzaskowski, Maciej; Uitterlinden, André G.; Verhulst, Frank C.; Ward, Mary E.; Wright, Margaret J.; Davey Smith, George; Deary, Ian J.; Johannesson, Magnus; Plomin, Robert; Visscher, Peter M.; Benjamin, Daniel J.; Koellinger, Philipp D.

2014-01-01

We identify common genetic variants associated with cognitive performance using a two-stage approach, which we call the proxy-phenotype method. First, we conduct a genome-wide association study of educational attainment in a large sample (n = 106,736), which produces a set of 69 education-associated SNPs. Second, using independent samples (n = 24,189), we measure the association of these education-associated SNPs with cognitive performance. Three SNPs (rs1487441, rs7923609, and rs2721173) are significantly associated with cognitive performance after correction for multiple hypothesis testing. In an independent sample of older Americans (n = 8,652), we also show that a polygenic score derived from the education-associated SNPs is associated with memory and absence of dementia. Convergent evidence from a set of bioinformatics analyses implicates four specific genes (KNCMA1, NRXN1, POU2F3, and SCRT). All of these genes are associated with a particular neurotransmitter pathway involved in synaptic plasticity, the main cellular mechanism for learning and memory. PMID:25201988

Reconstruction of spatio-temporal temperature from sparse historical records using robust probabilistic principal component regression

USGS Publications Warehouse

Tipton, John; Hooten, Mevin B.; Goring, Simon

2017-01-01

Scientific records of temperature and precipitation have been kept for several hundred years, but for many areas, only a shorter record exists. To understand climate change, there is a need for rigorous statistical reconstructions of the paleoclimate using proxy data. Paleoclimate proxy data are often sparse, noisy, indirect measurements of the climate process of interest, making each proxy uniquely challenging to model statistically. We reconstruct spatially explicit temperature surfaces from sparse and noisy measurements recorded at historical United States military forts and other observer stations from 1820 to 1894. One common method for reconstructing the paleoclimate from proxy data is principal component regression (PCR). With PCR, one learns a statistical relationship between the paleoclimate proxy data and a set of climate observations that are used as patterns for potential reconstruction scenarios. We explore PCR in a Bayesian hierarchical framework, extending classical PCR in a variety of ways. First, we model the latent principal components probabilistically, accounting for measurement error in the observational data. Next, we extend our method to better accommodate outliers that occur in the proxy data. Finally, we explore alternatives to the truncation of lower-order principal components using different regularization techniques. One fundamental challenge in paleoclimate reconstruction efforts is the lack of out-of-sample data for predictive validation. Cross-validation is of potential value, but is computationally expensive and potentially sensitive to outliers in sparse data scenarios. To overcome the limitations that a lack of out-of-sample records presents, we test our methods using a simulation study, applying proper scoring rules including a computationally efficient approximation to leave-one-out cross-validation using the log score to validate model performance. The result of our analysis is a spatially explicit reconstruction of spatio-temporal temperature from a very sparse historical record.

Avoiding and Correcting Bias in Score-Based Latent Variable Regression with Discrete Manifest Items

ERIC Educational Resources Information Center

Lu, Irene R. R.; Thomas, D. Roland

2008-01-01

This article considers models involving a single structural equation with latent explanatory and/or latent dependent variables where discrete items are used to measure the latent variables. Our primary focus is the use of scores as proxies for the latent variables and carrying out ordinary least squares (OLS) regression on such scores to estimate…

Correlates of disease-specific knowledge in Chinese patients with COPD.

PubMed

Wong, Carlos Kh; Yu, W C

2016-01-01

This study aimed to determine the associations of various sociodemographic factors with the level of disease-specific knowledge among Hong Kong Chinese patients with COPD. A cross-sectional survey of 100 Chinese adults with COPD recruited from outpatient clinics was conducted from September 2009 to September 2010. Data on the knowledge specific to COPD and patients' sociodemographics were collected from face-to-face interviews. Primary outcome of disease-specific knowledge was measured using 65-item Bristol COPD Knowledge Questionnaire (BCKQ), summing up the 65 items as the BCKQ overall score. Associations of sociodemographic factors with the BCKQ overall score were evaluated using the linear regression model. The mean BCKQ overall score of our patients was 41.01 (SD: 10.64). The knowledge in topics of "Smoking" and "Phlegm" achieved the first (3.97, SD: 0.82) and second (3.91, SD: 1.17) highest mean scores, respectively, while the topic of "Oral steroids" returned the lowest mean score of 1.89 (SD: 1.64). The BCKQ overall score progressively declined ( P <0.001) with increase in education level, with the highest BCKQ overall score of 46.71 at no formal education among all subgroups. Compared to nondrinkers, current drinkers were associated with lower total BCKQ score. We found that among COPD patients in outpatient clinics, impairments in the level of COPD knowledge were evident in patients who were current drinkers or had higher level of education.

Quality of life in children participating in a non-selective INR self-monitoring VKA-education programme.

PubMed

Amedro, Pascal; Bajolle, Fanny; Bertet, Helena; Cheurfi, Radhia; Lasne, Dominique; Nogue, Erika; Auquier, Pascal; Picot, Marie-Christine; Bonnet, Damien

2018-03-01

The quality of life (QoL) of children receiving vitamin K antagonist (VKA) treatment has been scarcely studied. To assess QoL of children, and its evolution, throughout our non-selective international normalized ratio (INR) self-monitoring education programme. Children and parents completed QoL questionnaires (Qualin, PedsQL) during education sessions. Scores were compared with those from controls. A total of 111 children (mean±standard deviation age 8.7±5.4 years) were included over a 3-year period. Indications for VKA treatment were congenital heart diseases (valve replacement [42.3%], total cavopulmonary connection [29.7%]), myocardiopathy (11.7%), coronary aneurysm (7.2%), venous/intracardiac thrombosis (4.5%), pulmonary artery hypertension (1.8%), arrhythmia (0.9%) and extra-cardiac disease (1.8%). Eighty children, 105 mothers and 74 fathers completed the QoL questionnaires. QoL was good among children aged 1-4 years and moderately impaired in those aged between 5 and 18 years. There was no significant relationship between self-reported QoL and patient's sex, type of VKA, number of group sessions attended, disease duration or time of diagnosis (prenatal or postnatal). QoL scores were significantly lower among children with congenital heart diseases compared with other diseases. There were few differences in QoL between children under transient VKA treatment and those treated for life. Parental proxy QoL scoring correlated well with but was significantly lower than child self-assessments. QoL reported by mothers increased throughout the education programme, independently of any improvement of the health condition. This QoL study provides original data from a large cohort of children and their parents participating in a formalized INR self-monitoring education programme for VKA treatment. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

Infectious disease-specific health literacy in Tibet, China

PubMed Central

Yang, Peng; Dunzhu, Ciren; Widdowson, Marc-Alain; Wu, Shuangsheng; Ciren, Pengcuo; Duoji, Dunzhu; Pingcuo, Wangqing; Dun, Bian; Ma, Chunna; Li, Jie; Pang, Xinghuo; Wang, Quanyi

2018-01-01

Summary This study was aimed to develop an instrument to assess infectious disease-specific health literacy (IDSHL) in the general population of Tibet, China and identify the association between IDSHL and reported infectious disease-related symptoms. A survey using a standardized questionnaire, which included 25 questions on knowledge, behaviors and skills regarding infectious diseases, was conducted in the general population of Tibet, China between September 2011 and November 2011. The 25 questions formed the index system of the instrument assessing IDSHL (total scores: 25 scores). Factors associated with index scores of IDSHL were identified by general linear model. The association between the index score of IDSHL and the occurrence of the five selected infectious disease symptoms (fever, diarrhea, rash, jaundice or conjunctivitis) were investigated using multivariate unconditional logistic regression. Among 5717 eligible participants in the survey, 4631 participants completed all of the 25 questions in the instrument. The instrument was reliable and valid as measured by the Cronbach’s alpha coefficient and split-half coefficient, and the confirmatory factor analysis. Only 1.0% (48/4631) answered ≥80% of the 25 questions correctly (score ≥20). Significant factors associated with lower health literacy score included female gender, older age, Tibetan group, lower education level, underlying diseases and more undeveloped area. For each increasing score of IDSHL, reports of fever, diarrhea or jaundice in the prior year were significantly decreased by 3% (p = 0.015), 4% (p = 0.004) and 16% (p < 0.001), respectively. Accurately measuring IDSHL could help identify those individuals with poor IDSHL, who could be targeted with specific interventions to improve health. PMID:27476868

Addressing the bias problem in the assessment of the quality of life of patients with dementia: determinants of the accuracy and precision of the proxy ratings.

PubMed

Gomez-Gallego, M; Gomez-Garcia, J; Ato-Lozano, E

2015-03-01

We aimed to examine the discrepancy between patients and caregivers' ratings of quality of life in terms of accuracy and precision, and identify factors associated with it, in order to facilitate the use of this scale as dementia progresses. Cross-sectional analytic study. Day care centres. Community-living patients with Alzheimer's disease in early or moderate stage and their principal caregivers. PARTICIPANTS rated patients' quality of life using DEMQOL. The discrepancy was assessed using the individual difference score and the residuals for each domain of DEMQOL. The scores on Mini-Mental State Examination, Geriatric Depression Scale, Neuropsychiatric Inventory, Clinical Insight Rating Scale, Cumulative Illness Rating Scale, Health Utilities Index Mark 3 and Zarit Burden Interview were considered as possible predictors of the discrepancy. A total of 276 subjects participated in the study (138 patients with Alzheimer's disease and their caregivers). Discrepancy measured by individual difference score was lower than that measured by the residuals. Burden and mood-related symptoms explained the positive differences and residuals, while pain, self-perceived depression and cognition determined the negative ones. Differences exist between patients and caregivers' perceptions about subjective states. The evaluations of each informant seem to be influenced by their own emotional state and the inner experience of the effects of the disease. Caregivers' ratings on DEMQOL could be useful to monitor the efficacy of any treatment whenever burden is low and patients have no great physical or emotional suffering.

Protect your heart: a culture-specific multimedia cardiovascular health education program.

PubMed

Shah, Amy; Clayman, Marla L; Glass, Sara; Kandula, Namratha R

2015-04-01

South Asians, the second fastest growing racial/ethnic minority in the United States, have high rates of coronary heart disease. Few coronary heart disease prevention efforts target this population. The authors developed and tested a culture-specific, multimedia coronary heart disease prevention education program in English and Hindi for South Asians. Participants were recruited from community organizations in Chicago, Illinois, between June and October of 2011. Bilingual interviewers used questionnaires to assess participants' knowledge and perceptions before and after the patient education program. The change from pretest score to posttest score was calculated using a paired t test. Linear regression was used to determine the association between posttest scores and education and language. Participants' (N = 112) average age was 41 years, 67% had more than a high school education, and 50% spoke Hindi. Participants' mean pretest score was 15 (SD = 4). After the patient education program, posttest scores increased significantly among all participants (posttest score = 24, SD = 4), including those with limited English proficiency. Lower education was associated with a lower posttest score (β = -2.2, 95% CI [-0.68, -3.83]) in adjusted regression. A culture-specific, multimedia patient education program significantly improved knowledge and perceptions about coronary heart disease prevention among South Asian immigrants. Culturally salient multimedia education may be an effective and engaging way to deliver health information to diverse patient populations.

Diagnostic accuracy of the MMSE in detecting probable and possible Alzheimer's disease in ethnically diverse highly educated individuals: an analysis of the NACC database.

PubMed

Spering, Cynthia C; Hobson, Valerie; Lucas, John A; Menon, Chloe V; Hall, James R; O'Bryant, Sid E

2012-08-01

To validate and extend the findings of a raised cut score of O'Bryant and colleagues (O'Bryant SE, Humphreys JD, Smith GE, et al. Detecting dementia with the mini-mental state examination in highly educated individuals. Arch Neurol. 2008;65(7):963-967.) for the Mini-Mental State Examination in detecting cognitive dysfunction in a bilingual sample of highly educated ethnically diverse individuals. Archival data were reviewed from participants enrolled in the National Alzheimer's Coordinating Center minimum data set. Data on 7,093 individuals with 16 or more years of education were analyzed, including 2,337 cases with probable and possible Alzheimer's disease, 1,418 mild cognitive impairment patients, and 3,088 nondemented controls. Ethnic composition was characterized as follows: 6,296 Caucasians, 581 African Americans, 4 American Indians or Alaska natives, 2 native Hawaiians or Pacific Islanders, 149 Asians, 43 "Other," and 18 of unknown origin. Diagnostic accuracy estimates (sensitivity, specificity, and likelihood ratio) of Mini-Mental State Examination cut scores in detecting probable and possible Alzheimer's disease were examined. A standard Mini-Mental State Examination cut score of 24 (≤23) yielded a sensitivity of 0.58 and a specificity of 0.98 in detecting probable and possible Alzheimer's disease across ethnicities. A cut score of 27 (≤26) resulted in an improved balance of sensitivity and specificity (0.79 and 0.90, respectively). In the cognitively impaired group (mild cognitive impairment and probable and possible Alzheimer's disease), the standard cut score yielded a sensitivity of 0.38 and a specificity of 1.00 while raising the cut score to 27 resulted in an improved balance of 0.59 and 0.96 of sensitivity and specificity, respectively. These findings cross-validate our previous work and extend them to an ethnically diverse cohort. A higher cut score is needed to maximize diagnostic accuracy of the Mini-Mental State Examination in individuals with college degrees.

Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales.

PubMed

Varni, James W; Limbers, Christine A; Burwinkle, Tasha M

2007-01-03

Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. While pediatric patient self-report should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete a HRQOL instrument, and reliable and valid parent proxy-report instruments are needed in such cases. Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization. Data from the PedsQL DatabaseSM were utilized to test the reliability and validity of parent proxy-report at the individual age subgroup level for ages 2-16 years as recommended by recent FDA guidelines. The sample analyzed represents parent proxy-report age data on 13,878 children ages 2 to 16 years from the PedsQL 4.0 Generic Core Scales DatabaseSM. Parents were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which their children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 3,718, 26.8%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 10,160, 73.2%). The percentage of missing item responses for the parent proxy-report sample as a whole was 2.1%, supporting feasibility. The majority of the parent proxy-report scales across the age subgroups exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the Total Scale Scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analyzing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL scale and summary score, across age subgroups, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium to large effect size range. The results demonstrate the feasibility, reliability, and validity of parent proxy-report at the individual age subgroup for ages 2-16 years. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which reliable and valid responses across age categories are achievable. Even as pediatric patient self-report is advocated, there remains a fundamental role for parent proxy-report in pediatric clinical trials and health services research.

Quality of life in patients with cognitive impairment: validation of the Quality of Life-Alzheimer's Disease scale in Portugal.

PubMed

Bárrios, Helena; Verdelho, Ana; Narciso, Sofia; Gonçalves-Pereira, Manuel; Logsdon, Rebecca; de Mendonça, Alexandre

2013-07-01

Quality of Life-Alzheimer's Disease (QOL-AD) is a widely used scale for the study of quality of life in patients with dementia. The aim of this study is the transcultural adaptation and validation of the QOL-AD scale in Portugal. Translation and transcultural adaptation was performed according to state-of-the-art recommendations. For the validation study, 104 patient/caregiver pairs were enrolled. Patients had mild cognitive impairment or mild-to-moderate dementia (due to Alzheimer's disease or vascular dementia). Participants were recruited in a dementia outpatient clinic setting and a long-term care dementia ward. An additional comparison group of 22 patients without cognitive impairment, and their proxies, was recruited in a family practice outpatient clinic. Sociodemographic information on patients and caregivers was obtained. Acceptability, reliability, and construct validity were analyzed. Internal consistency of the Portuguese version of QOL-AD was good for both patient and caregiver report (Cronbach's α = 0.867 and 0.858, respectively). Construct validity was confirmed by the correlation of patient reported QOL-AD with patient geriatric depression scale scores (ρ = -0.702, p < 0.001) and satisfaction with life scale scores (ρ = 0.543, p < 0.001). Caregiver ratings were correlated with neuropsychiatric inventory (NPI) total score (ρ = -0.404, p < 0.001), NPI-distress (ρ = -0.346, p < 0.001), and patient Mini-Mental State Examination (ρ = 0.319, p < 0.01). QOL-AD patient ratings were higher than caregiver ratings (p < 0.001). Both patient- and caregiver-rated QOL-AD scores were lower in patients with cognitive impairment than in the comparison group without cognitive impairment (p < 0.01). A Portuguese version of QOL-AD with consistent psychometric properties was obtained and is proposed as a useful tool for research and clinical purposes.

Peabody Picture Vocabulary Test: Proxy for Verbal IQ in Genetic Studies of Autism Spectrum Disorder

ERIC Educational Resources Information Center

Krasileva, Kate E.; Sanders, Stephan J.; Bal, Vanessa Hus

2017-01-01

This study assessed the utility of a brief assessment (the Peabody Picture Vocabulary Test-4th Edition; PPVT4) as a proxy for verbal IQ (VIQ) in large-scale studies of autism spectrum disorder (ASD). In a sample of 2,420 proband with ASD, PPVT4:IQ correlations were strong. PPVT4 scores were, on average, 5.46 points higher than VIQ; 79% of children…

Prediction of Post-operative Mortality in Patients with HCV-related Cirrhosis Undergoing Non-Hepatic Surgeries

PubMed Central

Hemida, Khalid; Shabana, Sherif Sadek; Said, Hani; Ali-Eldin, Fatma

2016-01-01

Introduction Patients with chronic liver diseases are at great risk for both morbidity and mortality during the post-operative period due to the stress of surgery and the effects of general anaesthesia. Aim The main aim of this study was to evaluate the value of Model for End-stage Liver Disease (MELD) score, as compared to Child-Turcotte-Pugh (CTP) score, for prediction of 30- day post-operative mortality in Egyptian patients with liver cirrhosis undergoing non-hepatic surgery under general anaesthesia. Materials and Methods A total of 60 patients with Hepatitis C Virus (HCV) - related liver cirrhosis were included in this study. Sensitivity and specificity of MELD and CTP scores were evaluated for the prediction of post-operative mortality. A total of 20 patients who had no clinical, biochemical or radiological evidence of liver disease were included to serve as a control group. Results The highest sensitivity and specificity for detection of post-operative mortality was detected at a MELD score of 13.5. CTP score had a sensitivity of 75%, a specificity of 96.4%, and an overall accuracy of 95% for prediction of post-operative mortality. On the other side and at a cut-off value of 13.5, MELD score had a sensitivity of 100%, a specificity of 64.0%, and an overall accuracy of 66.6% for prediction of post-operative mortality in patients with HCV- related liver cirrhosis. Conclusion MELD score proved to be more sensitive but less specific than CTP score for prediction of post-operative mortality. CTP and MELD scores may be complementary rather than competitive in predicting post-operative mortality in patients with HCV- related liver cirrhosis. PMID:27891371

Infectious disease-specific health literacy in Tibet, China.

PubMed

Yang, Peng; Dunzhu, Ciren; Widdowson, Marc-Alain; Wu, Shuangsheng; Ciren, Pengcuo; Duoji, Dunzhu; Pingcuo, Wangqing; Dun, Bian; Ma, Chunna; Li, Jie; Pang, Xinghuo; Wang, Quanyi

2018-02-01

This study was aimed to develop an instrument to assess infectious disease-specific health literacy (IDSHL) in the general population of Tibet, China and identify the association between IDSHL and reported infectious disease-related symptoms. A survey using a standardized questionnaire, which included 25 questions on knowledge, behaviors and skills regarding infectious diseases, was conducted in the general population of Tibet, China between September 2011 and November 2011. The 25 questions formed the index system of the instrument assessing IDSHL (total scores: 25 scores). Factors associated with index scores of IDSHL were identified by general linear model. The association between the index score of IDSHL and the occurrence of the five selected infectious disease symptoms (fever, diarrhea, rash, jaundice or conjunctivitis) were investigated using multivariate unconditional logistic regression. Among 5717 eligible participants in the survey, 4631 participants completed all of the 25 questions in the instrument. The instrument was reliable and valid as measured by the Cronbach's alpha coefficient and split-half coefficient, and the confirmatory factor analysis. Only 1.0% (48/4631) answered ≥80% of the 25 questions correctly (score ≥ 20). Significant factors associated with lower health literacy score included female gender, older age, Tibetan group, lower education level, underlying diseases and more undeveloped area. For each increasing score of IDSHL, reports of fever, diarrhea or jaundice in the prior year were significantly decreased by 3% (p = 0.015), 4% (p = 0.004) and 16% (p < 0.001), respectively. Accurately measuring IDSHL could help identify those individuals with poor IDSHL, who could be targeted with specific interventions to improve health. © The Author 2016. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Advance care planning and proxy decision making for patients with advanced Parkinson disease.

PubMed

Kwak, Jung; Wallendal, Maggie S; Fritsch, Thomas; Leo, Gary; Hyde, Trevor

2014-03-01

To examine advance care planning practices and proxy decision making by family healthcare proxies for patients with advanced Parkinson disease (PD). Sixty-four spouses and adult children, self-designated as a/the healthcare proxy for advanced patients with PD, participated in a cross-sectional survey study. Sixty patients with PD (95%) had completed a living will, but only 38% had shared the document with a physician. Among three life-support treatments--cardiopulmonary resuscitation (CPR), ventilator, and feeding tube--47% of patients opted for CPR, 16% for ventilator, and 20% for feeding tube. Forty-two percent of proxies did not know patients' preferences for one or more of the three life-support treatments. Only 28% of proxies reported that patients wanted hospice. Patients who shared advance directives with a physician were significantly less likely to choose CPR and a feeding tube and they were more likely to choose hospice. In a hypothetical end-of-life (EOL) scenario, the majority of proxies chose comfort care as the EOL goal of care (53%) and pain and symptom management only as the course of treatment option (72%); these proxy choices for patients, however, were not associated with patients' preferences for life support. Patients' proxies preferred a form of shared decision making with other family members and physicians. Advance care planning is effective when patients, families, and healthcare professionals together consider future needs for EOL care decisions. Further efforts are needed by healthcare professionals to provide evidence-based education about care options and facilitate advanced discussion and shared decision making by the patient and families.

12 CFR 563b.255 - What must the form of proxy include?

Code of Federal Regulations, 2013 CFR

2013-01-01

... proxy include? The form of proxy must include all of the following: (a) A statement in bold face type... separately. (d) The phrase “Revocable Proxy” in bold face type (at least 18 point). (e) A description of any... management will vote the proxy in accordance with the member's specifications. (j) A statement in bold face...

12 CFR 563b.255 - What must the form of proxy include?

Code of Federal Regulations, 2012 CFR

2012-01-01

... proxy include? The form of proxy must include all of the following: (a) A statement in bold face type... separately. (d) The phrase “Revocable Proxy” in bold face type (at least 18 point). (e) A description of any... management will vote the proxy in accordance with the member's specifications. (j) A statement in bold face...

Body mass index (BMI)-for-age and health-related quality of life (HRQOL) among high school students in Tehran.

PubMed

Jalali-Farahani, S; Chin, Y S; Amiri, P; Mohd Taib, M N

2014-09-01

The study aimed to determine the association between body mass index (BMI)-for-age and health-related quality of life (HRQOL) among high school students in Tehran. A total of 465 high school students (227 girls and 238 boys) and their parents were participated in this cross-sectional study. Body weight and height of the students were measured. For assessing HRQOL, both adolescent self-report and parent proxy-report of the Persian version of Pediatric Quality of Life Inventory (PedsQL™4.0) questionnaire were completed by adolescents and their parents respectively. The prevalence of overweight and obesity (38.5%) was higher than severe thinness and thinness (2.8%). Mean of adolescent self-reported and parent proxy-reported HRQOL total score were 80.26 ± 12.07 and 81.30 ± 14.08 respectively. In terms of HRQOL subscale scores, the highest subscale score of HRQOL was reported in social functioning (87.27 ± 14.40) and the lowest score was reported in emotional functioning (69.83 ± 18.69). Based on adolescent self-report, adolescent boys had significantly higher mean score for total and all subscale scores of HRQOL compared with girls (P < 0.05). BMI-for-age was inversely correlated to adolescent self-reported HRQOL total score (r = -0.25, P < 0.05). Based on adolescents self-report, HRQOL total score was significantly different by body weight status (F = 16.16, P < 0.05). Normal weight adolescents had significantly higher HRQOL total score compared with overweight (mean difference: 7.32; P < 0.05) and obese adolescents (mean difference: 9.10, P < 0.05). The HRQOL total score was not significantly different between normal weight and underweight adolescents (mean difference: 1.65, P = 0.96). However, based on parent proxy-reports, HRQOL total score was not significantly different by body weight status (F = 2.64, P = 0.059). More than one-third of adolescents were overweight and obese. BMI-for-age was inversely correlated to adolescent self-reported HRQOL. Based on adolescents' perspective, overweight and obese adolescents had poorer HRQOL compared with normal weight adolescents. Intervention studies are needed to improve the HRQOL of overweight and obese adolescents in Tehran. © 2013 John Wiley & Sons Ltd.

[Infectious diseases that people should be informed: a Delphi survey of clinicians engaged in practice of infectious diseases in Japan].

PubMed

Kashiwagi, Tomoko; Horiguchi, Itsuko; Ishikawa, Naoko; Marui, Eiji

2009-01-01

To identify specific infectious diseases about which the Japanese public should be informed. A Delphi survey was conducted, recruiting 26 physicians who are engaged in clinical practice of infectious diseases and working at designated medical institutions of infectious diseases in Japan. Following HIV/AIDS (first ranked), tuberculosis (second) and influenza (third), 24 diseases in total were identified based on "knowledge, awareness and behavior of inhabitants" or "social and clinico-epidemiological circumstances". Scores for the top three ranked diseases were more than two-folds of those for following diseases. Among the top 10 ranked diseases, 9 were in common with the previous survey result among public health physicians and veterinarians working for governmental agencies. Our findings of scores for specific diseases most likely reflect an importance of performing preventions and early diagnoses of severe diseases and promoting prophylaxis for travelers' diseases which tend to be factors for prioritizing infectious diseases among clinicians. The top-scored diseases among clinicians were consistent with those among public health officers, indicating the critical need to inform the public about these diseases. Nevertheless, both clinicians and public health experts have already attempted to promote preventions and/or treatment for these diseases in the previous time, and thus, the previous experience must be critically reviewed and reconsidered for improvements. In future, the similar surveys to ours should target specific subjects of experts and investigate more specific types of infectious diseases. Following such an expert survey, concrete action plans to inform the public about prioritized diseases are also called for.

Parental Problem-Solving Abilities and the Association of Sickle Cell Disease Complications with Health-related Quality of Life for School-age Children

PubMed Central

Barakat, Lamia P.; Daniel, Lauren C.; Smith, Kelsey; Robinson, M. Renée; Patterson, Chavis A.

2013-01-01

Children with sickle cell disease (SCD) are at risk for poor health-related quality of life (HRQOL). The current analysis sought to explore parent problem-solving abilities/skills as a moderator between SCD complications and HRQOL to evaluate applicability to pediatric SCD. At baseline, 83 children ages 6–12 years and their primary caregiver completed measures of the child HRQOL. Primary caregivers also completed a measure of social problem-solving. A SCD complications score was computed from medical record review. Parent problem-solving abilities significantly moderated the association of SCD complications with child self-report psychosocial HRQOL (p = .006). SCD complications had a direct effect on parent proxy physical and psychosocial child HRQOL. Enhancing parent problem-solving abilities may be one approach to improve HRQOL for children with high SCD complications; however, modification of parent perceptions of HRQOL may require direct intervention to improve knowledge and skills involved in disease management. PMID:24222378

Parental problem-solving abilities and the association of sickle cell disease complications with health-related quality of life for school-age children.

PubMed

Barakat, Lamia P; Daniel, Lauren C; Smith, Kelsey; Renée Robinson, M; Patterson, Chavis A

2014-03-01

Children with sickle cell disease (SCD) are at risk for poor health-related quality of life (HRQOL). The current analysis sought to explore parent problem-solving abilities/skills as a moderator between SCD complications and HRQOL to evaluate applicability to pediatric SCD. At baseline, 83 children ages 6-12 years and their primary caregiver completed measures of child HRQOL. Primary caregivers also completed a measure of social problem-solving. A SCD complications score was computed from medical record review. Parent problem-solving abilities significantly moderated the association of SCD complications with child self-report psychosocial HRQOL (p = .006). SCD complications had a direct effect on parent proxy physical and psychosocial child HRQOL. Enhancing parent problem-solving abilities may be one approach to improve HRQOL for children with high SCD complications; however, modification of parent perceptions of HRQOL may require direct intervention to improve knowledge and skills involved in disease management.

Life-Space Assessment and Physical Activity Scale for the Elderly: validity of proxy informant responses.

PubMed

Cavanaugh, James T; Crawford, Kelley

2014-08-01

To validate the administration of the Life-Space Assessment (LSA) and Physical Activity Scale for the Elderly (PASE) surveys to proxy informants, as would be necessary when measuring long-term outcomes in acutely ill, hospitalized older adults who are initially incapacitated but eventually return to the community. Cross-sectional study. General community. Convenience sample of dyads (N=40) composed of an ambulatory older adult and a familiar companion. Dyads completed the LSA and PASE surveys on 1 occasion. Companions based their responses on the recent mobility and physical activity of the older adult. Paired total scores for each instrument. At a group level, the difference between older adult and companion mean scores for each instrument was not significant (P>.05). Standardized mean difference values were small (d<0.1). Paired scores were significantly yet moderately associated: intraclass correlation coefficient(1,1)=.84 to .88; P<.01. Difference in scores was not associated with time spent together (P>.05) or older adult gait speed (P>.05). At an individual level, older adults and companions agreed more closely on the LSA than on the PASE. However, disagreement in excess of estimated measurement error occurred in 40% of the dyads for the LSA and in none of the dyads for the PASE. Older adults and companions collectively provided similar responses on each instrument. Nonetheless, varying levels of agreement within individual dyads suggested that proxy responses should be considered carefully. Implications for clinical research and practice research are discussed. Copyright © 2014 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Stunting, adiposity, and the individual-level "dual burden" among urban lowland and rural highland Peruvian children.

PubMed

Pomeroy, Emma; Stock, Jay T; Stanojevic, Sanja; Miranda, J Jaime; Cole, Tim J; Wells, Jonathan C K

2014-01-01

The causes of the "dual burden" of stunting and obesity remain unclear, and its existence at the individual level varies between populations. We investigate whether the individual dual burden differentially affects low socioeconomic status Peruvian children from contrasting environments (urban lowlands and rural highlands), and whether tibia length can discount the possible autocorrelation between adiposity proxies and height due to height measurement error. Stature, tibia length, weight, and waist circumference were measured in children aged 3-8.5 years (n = 201). Height and body mass index (BMI) z scores were calculated using international reference data. Age-sex-specific centile curves were also calculated for height, BMI, and tibia length. Adiposity proxies (BMI z score, waist circumference-height ratio (WCHtR)) were regressed on height and also on tibia length z scores. Regression model interaction terms between site (highland vs. lowland) and height indicate that relationships between adiposity and linear growth measures differed significantly between samples (P < 0.001). Height was positively associated with BMI among urban lowland children, and more weakly with WCHtR. Among rural highland children, height was negatively associated with WCHtR but unrelated to BMI. Similar results using tibia length rather than stature indicate that stature measurement error was not a major concern. Lowland and rural highland children differ in their patterns of stunting, BMI, and WCHtR. These contrasts likely reflect environmental differences and overall environmental stress exposure. Tibia length or knee height can be used to assess the influence of measurement error in height on the relationship between stature and BMI or WCHtR. Copyright © 2014 Wiley Periodicals, Inc.

Health disparities in chickenpox or shingles in Alberta?

PubMed

Russell, M L; Schopflocher, D P; Svenson, L W

2008-01-01

Exploring for evidence of socio-economic health disparities in chickenpox and shingles in Alberta, Canada. Chickenpox and shingles cases were identified from administrative data from Alberta's universal health care insurance system for 1994-2002. Incident cases were those with the earliest dated utilization of a health service (chickenpox: ICD9-CM 052/ICD10-CA B01; shingles: ICD9-CM 053/ ICD10-CA B02). Crude and age-specific rates were estimated for each year by an indicator of socio-demographic status based upon the nature of the payer and eligibility for health care premium subsidy (SES-proxy) for the provincial health care insurance system. Among young children there is a gradient of disparity in chickenpox rates prior to the year in which publicly funded vaccination programs were implemented. After this point, disparities decline but less so for First Nations children than for others. There was no evidence of disparity by SES-proxy for shingles. Publicly funded vaccination programs may effectively contribute to reduction in disease disparities for vaccine-preventable diseases. Further study is required to ascertain why disparities continue for First Nations children.

Soil carbon cycling proxies: Understanding their critical role in predicting climate change feedbacks

DOE Office of Scientific and Technical Information (OSTI.GOV)

Bailey, Vanessa L.; Bond-Lamberty, Ben; DeAngelis, Kristen

The complexity of processes and interactions that drive soil C dynamics necessitate the use of proxy variables to represent soil characteristics that cannot be directly measured (correlative proxies), or that aggregate information about multiple soil characteristics into one variable (integrative proxies). These proxies have proven useful for understanding the soil C cycle, which is highly variable in both space and time, and are now being used to make predictions of the C fate and persistence under future climate scenarios. As these proxies are used at increasingly larger scales, the C pools and processes that proxies represent must be thoughtfully consideredmore » in order to minimize uncertainties in empirical understanding, as well as in model parameters and in model outcomes. The importance of these uncertainties is further amplified by the current need to make predictions of the C cycle for the non steady state environmental conditions resulting from global climate change. To clarify the appropriate uses of proxy variables, we provide specific examples of proxy variables that could improve decision making, adaptation choices, and modeling skill, while not foreclosing on – and also encouraging – continued work on their mechanistic underpinnings. We explore the use of three common soil proxies used to study soil organic matter: metabolic quotient, clay content, and physical fractionation. We also consider emerging data types, specifically genome-sequence data, and how these serve as proxies for microbial community activities. We opine that the demand for increasing mechanistic detail, and the flood of data from new imaging and genetic techniques, does not replace the value of correlative and integrative proxies--variables that are simpler, easier, or cheaper to measure. By closely examining the current knowledge gaps and broad assumptions in soil C cycling with the proxies already in use, we can develop new hypotheses and specify criteria for new and needed proxies.« less

General and disease-specific use of outcomes scores for the shoulder: a survey of AOSSM, AANA, and ISAKOS members.

PubMed

Provencher, Matthew T; Frank, Rachel M; Scuderi, Matthew G; Solomon, Daniel J; Ghodadra, Neil S; Bach, Bernard R; McCarty, Eric; Romeo, Anthony A

2014-09-01

To report on the knowledge and use of both general and disease-specific shoulder outcomes scores among orthopedic surgeons. A 22-question Internet survey was administered to members of the American Orthopaedic Society for Sports Medicine, the Arthroscopy Association of North American, and the International Society of Arthroscopy, Knee Surgery, and Orthopedic Sports Medicine via voluntary e-mail participation. Questions targeted demographic information, preferred surgical management of shoulder conditions, and the preferred use of shoulder outcomes instruments in clinical practice. Excluding defunct and duplicate e-mails among membership societies, a total of 3892 unique e-mails were sent, from which 1129 surveys were returned and were fully completed (29%). The largest number of respondents were in private practice (52%); 21% were in academia; and 26% were in a mix of settings. As for location, 74% practiced in the United States, 10% in Europe, 8% in Mexico/South America, and 6% in Asia. A total of 31% total respondents used scores all or most of the time, and 30% used scores at least some of the time. Respondents felt that the 3 most commonly utilized shoulder scores were the American Shoulder and Elbow Surgeons (ASES) score, the University of California at Los Angeles (UCLA) score, and the Constant score. The majority of respondents (76%) performed all-arthroscopic instability repairs. The ASES and Western Ontario Shoulder Instability Index (WOSI) scores were the most preferred measures to monitor instability patients, whether or not the scores were actually implemented in their practice. Most perform between 10 and 25 superior labrum anterior-posterior repairs per year and preferred the ASES, UCLA, and Constant scores for these repairs; rotator cuff repair preferred outcomes instruments were similar. When asked to choose 1 score for all shoulder conditions, the ASES was the clear favorite. This study reports the knowledge and utilization of shoulder scores for both general and disease-specific conditions. Most respondents preferred the ASES score for most shoulder conditions; however, other scores, such as the WOSI, the Constant, and the Short-Form (SF)-36/12, were popular. This information offers insight into the current and future use of shoulder outcomes both for general and disease-specific use.

What factors influence parents' perception of the quality of life of children and adolescents with neurocardiogenic syncope?

PubMed

Grimaldi Capitello, Teresa; Fiorilli, Caterina; Placidi, Silvia; Vallone, Roberta; Drago, Fabrizio; Gentile, Simonetta

2016-05-17

Health-related quality of life, which can be investigated using self-reports or parental reports, could help healthcare providers understand the subjective perception of well-being of children suffering from recurrent syncopal episodes. Quality of life is not only a measure of health but is also a reflection of patients' and parents' perceptions and expectations of health. This study assessed: 1) the consistency and agreement between pediatric patients' self-reports and parents' proxy-reports of their child's quality of life; 2) whether this patient-parent agreement is dependent on additional demographic and clinical or distress factors; 3) whether the parents' psychological distress influences children's and parents' responses to questionnaires on quality of life. One hundred and twenty-five Italian children aged 6-18 years old (Mean age 12.75, SD 2.73, 48 % female) and their parents completed the Pediatric Quality of Life inventory with self-reports and parent-proxy reports, the Parenting Stress Index - Short Form questionnaire and the Child Behavior Checklist for ages 6-18. Patients' and parents' scores on quality of life were analyzed via an intra-class correlation coefficient, Spearman's correlation coefficient, Wilcoxon signed-rank test, and Bland-Altman plot. Child-rated quality of life was lower than parent-rated quality of life. However, there were no statistically significant differences between pediatric patients' self-reports and their parents' proxy-reports of on quality of life. Clinically significant patient-parent variation in pediatric health-related quality of life was observed. Differences in patient-parent proxy Pediatric Quality of Life inventory Total Scale Score scores were significantly associated with patient age. Concerning parents' proxy-ratings of their children's quality of life on the Pediatric Quality of Life inventory, parental stress was found to be negatively associated with their perceptions of their child's psychological quality of life. Indeed, childhood illness is a source of stress for the whole family, and exposes family members to a greater risk of developing psychosocial difficulties. In conclusion, this study invites reflection on the use of cross-informants in investigating the quality of life of young patients with neurocardiogenic syncope and the psychological factors that influence how quality of life is perceived.

An Empirical Comparison of the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U in a Post-Hospitalisation Population of Frail Older People Living in Residential Aged Care.

PubMed

Ratcliffe, Julie; Flint, Thomas; Easton, Tiffany; Killington, Maggie; Cameron, Ian; Davies, Owen; Whitehead, Craig; Kurrle, Susan; Miller, Michelle; Liu, Enwu; Crotty, Maria

2017-06-01

To empirically compare the measurement properties of the DEMQOL-U and DEMQOL-Proxy-U instruments to the EQ-5D-5L and its proxy version (CEQ-5D-5L) in a population of frail older people living in residential aged care in the post-hospitalisation period following a hip fracture. A battery of instruments to measure health-related quality of life (HRQoL), cognition, and clinical indicators of depression, pain and functioning were administered at baseline and repeated at 4 weeks' follow-up. Descriptive summary statistics were produced and psychometric analyses were conducted to assess the levels of agreement, convergent validity and known group validity between clinical indicators and HRQoL measures. There was a large divergence in mean (SD) utility scores at baseline for the EQ-5D-5L and DEMQOL-U [EQ-5D-5L mean 0.21 (0.19); DEMQOL-U mean 0.79 (0.14)]. At 4 weeks' follow-up, there was a marked improvement in EQ-5D-5L scores whereas DEMQOL-U scores had deteriorated. [EQ-5D-5L mean 0.45 (0.38); DEMQOL-U mean 0.58 (0.38)]. The EQ-5D and CEQ-5D-5L were more responsive to the physical recovery trajectory experienced by frail older people following surgery to repair a fractured hip, whereas the DEMQOL-U and DEMQOL-Proxy-U appeared more responsive to the changes in delirium and dementia symptoms often experienced by frail older people in this period. This study presents important insights into the HRQoL of a relatively under-researched population of post-hospitalisation frail older people in residential care. Further research should investigate the implications for economic evaluation of self-complete versus proxy assessment of HRQoL and the choice of preference-based instrument for the measurement and valuation of HRQoL in older people exhibiting cognitive decline, dementia and other co-morbidities.

Measurement Error Correction Formula for Cluster-Level Group Differences in Cluster Randomized and Observational Studies

ERIC Educational Resources Information Center

Cho, Sun-Joo; Preacher, Kristopher J.

2016-01-01

Multilevel modeling (MLM) is frequently used to detect cluster-level group differences in cluster randomized trial and observational studies. Group differences on the outcomes (posttest scores) are detected by controlling for the covariate (pretest scores) as a proxy variable for unobserved factors that predict future attributes. The pretest and…

Quality of life related to swallowing in Parkinson's disease.

PubMed

Carneiro, Danielle; das Graças Wanderley de Sales Coriolano, Maria; Belo, Luciana Rodrigues; de Marcos Rabelo, Aneide Rocha; Asano, Amdore Guescel; Lins, Otávio Gomes

2014-10-01

Swallowing difficulties in Parkinson's disease can result in decreased quality of life. The swallowing quality of life questionnaire (SWAL-QOL) is an instrument for specifically assessing quality of life with respect to swallowing, which has been little explored in patients with Parkinson's disease (PD). The goal of this study was to evaluate the quality of life with respect to swallowing in persons with PD compared to controls and at several stages of the disease using the SWAL-QOL. The experimental group was composed of 62 persons with PD at stages 1-4. Forty-one age-matched healthy subjects constituted the control group. The SWAL-QOL scores were significantly lower for the patients with PD than for the controls in all SWAL-QOL domains. Eating duration had the largest difference in score between persons with PD and the controls and the lowest mean score, followed by communication, fatigue, fear, sleep, and food selection. The scores of most domains were lower at later stages of the disease. The scores for eating duration, symptom frequency, and sleep were significantly lower at stage 4 than stages 1 and 2. In conclusion, patients with PD have significantly lower scores in all domains of the SWAL-QOL than normal controls. This means swallowing difficulties occurring in patients with PD negatively affect their QOL. Progression of the disease worsens swallowing QOL, more specifically in the domains of eating duration, symptom frequency, and sleep. This occurs mostly at later stages of the disease.

The life expectancy gap between North and South Korea from 1993 to 2008.

PubMed

Bahk, Jinwook; Ezzati, Majid; Khang, Young-Ho

2018-03-12

Comparative research on health outcomes in North and South Korea offers a unique opportunity to explore political and social determinants of health. We examined the age- and cause-specific contributions to the life expectancy (LE) gap between the two Koreas. We calculated the LE at birth in 1993 and 2008 among North and South Koreans, and cause-specific contributions to the LE discrepancy between the two Koreas in 2008. The cause-specific mortality data from South Korea were used as proxies for the cause-specific mortality data in North Korea in 2008. The LE gap between the two Koreas was approximately 1 year in 1993, but grew to approximately 10 years in 2008. This discrepancy was attributable to increased gaps in mortality among children younger than 1 year and adults 55 years of age or older. The major causes of the increased LE gap were circulatory diseases, digestive diseases, infant mortality, external causes, cancers and infectious diseases. This study underscores the urgency of South Korean and international humanitarian aid programs to reduce the mortality rate of the North Korean people.

Behavioral Problems and Childhood Epilepsy: Parent vs Child Perspectives.

PubMed

Eom, Soyong; Caplan, Rochelle; Berg, Anne T

2016-12-01

To test whether the reported association between pediatric epilepsy and behavioral problems may be distorted by the use of parental proxy report instruments. Children in the Connecticut Study of Epilepsy were assessed 8-9 years after their epilepsy diagnosis (time-1) with the parent-proxy Child Behavior Check List (CBCL) (ages 6-18 years) or the Young Adult Self-Report (≥18 years of age). For children <18 years of age, parents also completed the Child Health Questionnaire, which contains scales for impact of child's illness on the parents. The same study subjects completed the Adult Self-Report 6-8 years later (time-2). Sibling controls were also tested. Case-control differences were examined for evidence suggesting more behavioral problems in cases with epilepsy than in controls based on proxy- vs self-report measures. At time-1, parent-proxy CBCL scores were significantly higher (worse) for cases than controls (n = 140 matched pairs). After adjustment for Child Health Questionnaire scales reflecting parent emotional and time impact, only 1 case-control difference on the CBCL remained significant. Self-reported Young Adult Self-Report scores did not differ between cases and controls (n = 42 pairs). At time-2, there were no significant self-reported case-control differences on the Adult Self-Report (n = 105 pairs). Parent-proxy behavior measures appear to be influenced by the emotional impact of epilepsy on parents. This may contribute to apparent associations between behavioral problems and childhood epilepsy. Self-report measures in older adolescents (>18 years of age) and young adults do not confirm parental perceptions. Evidence suggesting more behavioral problems in children with epilepsy should be interpreted in light of the source of information. Copyright © 2016 Elsevier Inc. All rights reserved.

Correlating wine quality indicators to chemical and sensory measurements.

PubMed

Hopfer, Helene; Nelson, Jenny; Ebeler, Susan E; Heymann, Hildegarde

2015-05-12

Twenty-seven commercial Californian Cabernet Sauvignon wines of different quality categories were analyzed with sensory and chemical methods. Correlations between five quality proxies-points awarded during a wine competition, wine expert scores, retail price, vintage, and wine region-were correlated to sensory attributes, volatile compounds, and elemental composition. Wine quality is a multi-faceted construct, incorporating many different layers. Depending on the quality proxy studied, significant correlations between quality and attributes, volatiles and elements were found, some of them previously reported in the literature.

Diagnostic Accuracy of the MMSE in Detecting Probable and Possible Alzheimer's Disease in Ethnically Diverse Highly Educated Individuals: An Analysis of the NACC Database

PubMed Central

Spering, Cynthia C.; Hobson, Valerie; Lucas, John A.; Menon, Chloe V.; Hall, James R.

2012-01-01

Background. To validate and extend the findings of a raised cut score of O’Bryant and colleagues (O’Bryant SE, Humphreys JD, Smith GE, et al. Detecting dementia with the mini-mental state examination in highly educated individuals. Arch Neurol. 2008;65(7):963–967.) for the Mini-Mental State Examination in detecting cognitive dysfunction in a bilingual sample of highly educated ethnically diverse individuals. Methods. Archival data were reviewed from participants enrolled in the National Alzheimer's Coordinating Center minimum data set. Data on 7,093 individuals with 16 or more years of education were analyzed, including 2,337 cases with probable and possible Alzheimer's disease, 1,418 mild cognitive impairment patients, and 3,088 nondemented controls. Ethnic composition was characterized as follows: 6,296 Caucasians, 581 African Americans, 4 American Indians or Alaska natives, 2 native Hawaiians or Pacific Islanders, 149 Asians, 43 “Other,” and 18 of unknown origin. Results. Diagnostic accuracy estimates (sensitivity, specificity, and likelihood ratio) of Mini-Mental State Examination cut scores in detecting probable and possible Alzheimer's disease were examined. A standard Mini-Mental State Examination cut score of 24 (≤23) yielded a sensitivity of 0.58 and a specificity of 0.98 in detecting probable and possible Alzheimer's disease across ethnicities. A cut score of 27 (≤26) resulted in an improved balance of sensitivity and specificity (0.79 and 0.90, respectively). In the cognitively impaired group (mild cognitive impairment and probable and possible Alzheimer's disease), the standard cut score yielded a sensitivity of 0.38 and a specificity of 1.00 while raising the cut score to 27 resulted in an improved balance of 0.59 and 0.96 of sensitivity and specificity, respectively. Conclusions. These findings cross-validate our previous work and extend them to an ethnically diverse cohort. A higher cut score is needed to maximize diagnostic accuracy of the Mini-Mental State Examination in individuals with college degrees. PMID:22396476

Co-calibrating quality-of-life scores from three pulmonary disorders: implications for comparative-effectiveness research.

PubMed

Rouse, M; Twiss, J; McKenna, S P

2016-06-01

Background Efficient use of health resources requires accurate outcome assessment. Disease-specific patient-reported outcome (PRO) measures are designed to be highly relevant to patients with a specific disease. They have advantages over generic PROs that lack relevance to patient groups and miss crucial impacts of illness. It is thought that disease-specific measurement cannot be used in comparative effectiveness research (CER). The present study provides further evidence of the value of disease-specific measures in making valid comparisons across diseases. Methods The Asthma Life Impact Scale (ALIS, 22 items), Living with Chronic Obstructive Pulmonary Disease (LCOPD, 22 items) scale, and Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR, 25 items) were completed by 140, 162, and 91 patients, respectively. The three samples were analyzed for fit to the Rasch model, then combined into a scale consisting of 58 unique items and re-analyzed. Raw scores on the three measures were co-calibrated and a transformation table produced. Results The scales fit the Rasch model individually (ALIS Chi(2) probability value (p-Chi(2)) = 0.05; LCOPD p-Chi(2 )=( )0.38; CAMPHOR p-Chi(2 )=( )0.92). The combined data also fit the Rasch model (p-Chi(2 )=( )0.22). There was no differential item functioning related to age, gender, or disease. The co-calibrated scales successfully distinguished between perceived severity groups (p < 0.001). Limitations The samples were drawn from different sources. For scales to be co-calibrated using a common item design, they must be based on the same theoretical construct, be unidimensional, and have overlapping items. Conclusions The results showed that it is possible to co-calibrate scores from disease-specific PRO measures. This will permit more accurate and sensitive outcome measurement to be incorporated into CER. The co-calibration of needs-based disease-specific measures allows the calculation of γ scores that can be used to compare directly the impact of any type of interventions on any diseases included in the co-calibration.

Understanding the Cognitive and Affective Mechanisms that Underlie Proxy Risk Perceptions among Caregivers of Asthmatic Children.

PubMed

Shepperd, James A; Lipsey, Nikolette P; Pachur, Thorsten; Waters, Erika A

2018-07-01

Medical decisions made on behalf of another person-particularly those made by adult caregivers for their minor children-are often informed by the decision maker's beliefs about the treatment's risks and benefits. However, we know little about the cognitive and affective mechanisms influencing such "proxy" risk perceptions and about how proxy risk perceptions are related to prominent judgment phenomena. Adult caregivers of minor children with asthma ( N = 132) completed an online, cross-sectional survey assessing 1) cognitions and affects that form the basis of the availability, representativeness, and affect heuristics; 2) endorsement of the absent-exempt and the better-than-average effect; and 3) proxy perceived risk and unrealistic comparative optimism of an asthma exacerbation. We used the Pediatric Asthma Control and Communication Instrument (PACCI) to assess asthma severity. Respondents with higher scores on availability, representativeness, and negative affect indicated higher proxy risk perceptions and (for representativeness only) lower unrealistic optimism, irrespective of asthma severity. Conversely, respondents who showed a stronger display of the better-than-average effect indicated lower proxy risk perceptions but did not differ in unrealistic optimism. The absent-exempt effect was unrelated to proxy risk perceptions and unrealistic optimism. Heuristic judgment processes appear to contribute to caregivers' proxy risk perceptions of their child's asthma exacerbation risk. Moreover, the display of other, possibly erroneous, judgment phenomena is associated with lower caregiver risk perceptions. Designing interventions that target these mechanisms may help caregivers work with their children to reduce exacerbation risk.

Neuropsychological Correlates of Capacity Determinations in Alzheimer’s Disease: Implications for Assessment

PubMed Central

Palmer, Barton W.; Ryan, Kerry A.; Kim, H. Myra; Karlawish, Jason H.; Appelbaum, Paul S.; Kim, Scott Y. H.

2011-01-01

Objectives To explore the neuropsychological correlates of the capacity to consent to research and to appoint a research proxy among persons with Alzheimer’s disease. Design, Setting, and Participants Interview study of 77 persons with Alzheimer’s disease recruited through an Alzheimer’s disease research center and a memory disorder clinic. Measurements The capacity to consent to two research scenarios (a drug randomized clinical trial and a neurosurgical clinical trial) and the capacity to appoint a research proxy were determined by five experienced consultation psychiatrists who rendered categorical judgments based on videotaped interviews of the MacArthur Competence Assessment Tool-Clinical Research (MacCAT-CR) and the Capacity to Appoint a Proxy Assessment (CAPA). Mattis Dementia Rating Scale-2 (DRS-2) was used to assess neuropsychological functioning. Results The capacity to appoint a proxy and to consent to the drug randomized clinical trial, as determined by a majority or greater opinion of the 5-psychiatrist panel, were predicted by Conceptualization and Initiation/Perseveration subscales whereas the capacity to consent to a neurosurgical randomized clinical trial was predicted by the Memory subscale. Furthermore, the more lenient individual psychiatrists’ judgments were predicted by the Conceptualization subscale whereas the stricter psychiatrists’ judgments were predicted by the Memory subscale. Conclusions How experienced psychiatrists view Alzheimer’s patients’ capacity for consenting to research and for appointing a proxy may be related to the patients’ conceptualization and memory functioning. More explicit and standardized guidance on the role of short term memory in capacity determinations may be useful. PMID:23498384

Adverse Childhood Experiences Are Linked to Age of Onset and Reading Recognition in Multiple Sclerosis.

PubMed

Shaw, Michael T; Pawlak, Natalie O; Frontario, Ariana; Sherman, Kathleen; Krupp, Lauren B; Charvet, Leigh E

2017-01-01

Adverse childhood experiences (ACEs) exert a psychological and physiological toll that increases risk of chronic conditions, poorer social functioning, and cognitive impairment in adulthood. To investigate the relationship between childhood adversity and clinical disease features in multiple sclerosis (MS). Sixty-seven participants with MS completed the ACE assessment and neuropsychological assessments as part of a larger clinical trial of cognitive remediation. Adverse childhood experience scores, a measure of exposure to adverse events in childhood, significantly predicted age of MS onset ( r  = -0.30, p  = 0.04). ACEs were also linked to reading recognition (a proxy for premorbid IQ) ( r  = -0.25, p  = 0.04). ACE scores were not related to age, current disability, or current level of cognitive impairment measured by the Symbol Digit Modalities Test (SDMT). Childhood adversity may increase the likelihood of earlier age of onset and poorer estimated premorbid IQ in MS.

[Somatic disease or Munchausen syndrome by proxy? Mother's or child's disease? Diagnostic controversies].

PubMed

Janas-Kozik, Małgorzata; Albert, Joanna; Kresimon, Ewa; Stokowacka-Zakrzewska, Magdalena; Wawrzyniak, Karina

2007-01-01

INTRODUCTIONn: The Munchausen Syndrome by Proxy occurs when parents make a child believe he or she suffers from a disease while in fact this is not true. A medical diagnosis ruling out a possible disease of the child does not calm the parents down and only confirms--in their belief--the doctor's incompetence which in turn makes them seek a second opinion. This may be repeated over and over again and be accompanied by administration of medicines, overprotection, introducing a diet, limiting exercise as well as limiting motoric and mental development. Authors present diagnostic difficulties in diagnosing the Munchausen syndrome. A 6-year old girl was hospitalized for the first time at the Developmental Age Psychiatry and Psychotherapy Ward of the John Paul II Pediatric Center in Sosnowiec, Poland (until then she had received psychiatric treatment at the Center on an outpatient basis only). Medical history provided by her mother as well as supplied documents show numerous hospitalizations at Pediatric Wards since the girl was 6 weeks old due to intensified vomiting and frequent diarrheas. Since the age of 4, the girl has been provoking vomiting as well as temporarily refusing meals and liquids. Authors present diagnostic difficulties in diagnosing the Munchausen syndrome mainly caused by discharging the patient from the Ward on her mother's request as well as non-specific nature of the symptoms.

Validity of retrospective disease activity assessment in systemic lupus erythematosus.

PubMed

Arce-Salinas, A; Cardiel, M H; Guzmán, J; Alcocer-Varela, J

1996-05-01

To evaluate the validity of retrospective disease activity assessment derived from clinical charts. We prospectively evaluated 37 patients with systemic lupus erythematosus (SLE) in 90 visits using the SLE Disease Activity Index (SLEDAI), the Mexican SLEDAI (Mex-SLEDAI), and the Lupus Activity Criteria Count (LACC) indices. Routine clinical observations were written by rheumatologists blind to index scores. These notes were reviewed 2 years later to obtain retrospective index scores and their validity was assessed using prospective scores as the standard. Statistical analysis was by Spearman's rank correlation coefficient (rs), Wilcoxon matched pairs test, kappa statistic, and intraclass correlation coefficient (ri). We calculated the sensitivity and specificity of retrospective indices to detect active disease. Median retrospective scores were lower in all indices: SLEDAI (4 VS 2, p =0.004, RS = 0.68, ri = 0.30); Mex-SLEDAI (2 vs 1, p < 0.0003, rs = 0.79, ri = 0.31); and LACC (1 vs 1, p = 0.007, rs = 0.65, ri = 0.21). Used to detect active SLE, the retrospective SLEDAI had a sensitivity of 0.68 and a specificity of 0.86; corresponding values for the Mex-SLEDAI were 0.72 and 0.91, and for the LACC, 0.77 and 0.76. Retrospective disease activity indices tended to provide lower scores than prospective evaluations. They often missed patients with mildly active disease, but when positive they were good predictors of disease activity.

[Toward constructing a system for detecting and coping with senile dementia in early stages among community-dwelling older people].

PubMed

Fujiwara, Yoshinori; Amano, Hidenori; Mori, Setsuko; Watanabe, Shuichiro; Kumagai, Shu; Yoshida, Yuko; Kim, Jungnim; Takabayashi, Koji; Yoshida, Hiroto; Ishihara, Miyuki; Eguchi, Fusako; Fuse, Sumie; Morita, Masahiro; Nagai, Hiroko; Shinkai, Shoji

2003-08-01

To establish a community health care system for screening community-dwelling older people with mild cognitive decline (MCD) and early diagnosis by a medical specialist. Out of all the elderly residents aged 65 years and over living in Yoita town in 2000 (n = 1673), 1544 participated in the interview survey held at community halls or at home (92.3% response). They underwent a Mini-Mental State Examination (MMSE) for assessment of cognitive function and answered questionnaires covering socio-demographic, psychological, physical and medical, and social activity items (2000/11). We defined cognitive decline as an MMSE < or = 1 SD below the age-specific mean (n = 371). Out of a total eligible population of 332, 158 pairs of subjects and their proxies participated in a follow-up survey (2001/11). The subjects themselves underwent MMSE again, and were asked for complaints of memory-related problems. Proxies answered about functional capacity and memory-related problems of subjects, for which we assessed the level of dementia with the Clinical Dementia Rating (CDR). We established criteria for encouragement to undergo detailed examination by a medical specialist as follows. 1) MMSE scores < or = 1 SD below age-specific means at both baseline and follow-up surveys, or 2) CDR > or = 0.5, and 3) not due to mental retardation. Non-participants had significant higher MMSE scores but were younger in the follow-up survey. Out of 96 subjects eligible for the detailed examination, 47 participants showed a tendency for older age with lower MMSE scores or younger age with higher MMSE scores than the average in the follow-up survey. The detailed examinations confirmed dementia of Alzheimer's type in 22 and vascular dementia in 13 on DSM-IV or magnetic resonance imaging. During our screening, 8 community care saloons were opened and the number of facilities for older people with cognitive decline is increasing. To establish a community health care system to screen and cope with community-dwelling older people with MCD in earlier stages, increased awareness of residents with slight MCD is especially important. Our attempt also suggested the importance of educational lectures, methods for testing cognitive function, and dementia care activity.

Proxy-Produced Ethnographic Work: What Are the Problems, Issues, and Dilemmas Arising from Proxy-Ethnography?

ERIC Educational Resources Information Center

Martinussen, Marie; Højbjerg, Karin; Tamborg, Andreas Lindenskov

2018-01-01

This article addresses the implications of researcher-student cooperation in the production of empirical material. For the student to replace the experienced researcher and work under the researcher's supervision, we call such work proxy-produced ethnographic work. Although there are clear advantages, the specific relations and positions arising…

Normalization of cortical thickness measurements across different T1 magnetic resonance imaging protocols by novel W-Score standardization.

PubMed

Chung, Jinyong; Yoo, Kwangsun; Lee, Peter; Kim, Chan Mi; Roh, Jee Hoon; Park, Ji Eun; Kim, Sang Joon; Seo, Sang Won; Shin, Jeong-Hyeon; Seong, Joon-Kyung; Jeong, Yong

2017-10-01

The use of different 3D T1-weighted magnetic resonance (T1 MR) imaging protocols induces image incompatibility across multicenter studies, negating the many advantages of multicenter studies. A few methods have been developed to address this problem, but significant image incompatibility still remains. Thus, we developed a novel and convenient method to improve image compatibility. W-score standardization creates quality reference values by using a healthy group to obtain normalized disease values. We developed a protocol-specific w-score standardization to control the protocol effect, which is applied to each protocol separately. We used three data sets. In dataset 1, brain T1 MR images of normal controls (NC) and patients with Alzheimer's disease (AD) from two centers, acquired with different T1 MR protocols, were used (Protocol 1 and 2, n = 45/group). In dataset 2, data from six subjects, who underwent MRI with two different protocols (Protocol 1 and 2), were used with different repetition times, echo times, and slice thicknesses. In dataset 3, T1 MR images from a large number of healthy normal controls (Protocol 1: n = 148, Protocol 2: n = 343) were collected for w-score standardization. The protocol effect and disease effect on subjects' cortical thickness were analyzed before and after the application of protocol-specific w-score standardization. As expected, different protocols resulted in differing cortical thickness measurements in both NC and AD subjects. Different measurements were obtained for the same subject when imaged with different protocols. Multivariate pattern difference between measurements was observed between the protocols. Classification accuracy between two protocols was nearly 90%. After applying protocol-specific w-score standardization, the differences between the protocols substantially decreased. Most importantly, protocol-specific w-score standardization reduced both univariate and multivariate differences in the images while maintaining the AD disease effect. Compared to conventional regression methods, our method showed the best performance for in terms of controlling the protocol effect while preserving disease information. Protocol-specific w-score standardization effectively resolved the concerns of conventional regression methods. It showed the best performance for improving the compatibility of a T1 MR post-processed feature, cortical thickness. Copyright © 2017 Elsevier Inc. All rights reserved.

Family matters: dyadic agreement in end-of-life medical decision making.

PubMed

Schmid, Bettina; Allen, Rebecca S; Haley, Philip P; Decoster, Jamie

2010-04-01

We examined race/ethnicity and cultural context within hypothetical end-of-life medical decision scenarios and its influence on patient-proxy agreement. Family dyads consisting of an older adult and 1 family member, typically an adult child, responded to questions regarding the older adult's preferences for cardiopulmonary resuscitation, artificial feeding and fluids, and palliative care in hypothetical illness scenarios. The responses of 34 Caucasian dyads and 30 African American dyads were compared to determine the extent to which family members could accurately predict the treatment preferences of their older relative. We found higher treatment preference agreement among African American dyads compared with Caucasian dyads when considering overall raw difference scores (i.e., overtreatment errors can compensate for undertreatment errors). Prior advance care planning moderated the effect such that lower levels of advance care planning predicted undertreatment errors among African American proxies and overtreatment errors among Caucasian proxies. In contrast, no racial/ethnic differences in treatment preference agreement were found within absolute difference scores (i.e., total error, regardless of the direction of error). This project is one of the first to examine the mediators and moderators of dyadic racial/cultural differences in treatment preference agreement for end-of-life care in hypothetical illness scenarios. Future studies should use mixed method approaches to explore underlying factors for racial differences in patient-proxy agreement as a basis for developing culturally sensitive interventions to reduce racial disparities in end-of-life care options.

A Robust Outlier Approach to Prevent Type I Error Inflation in Differential Item Functioning

ERIC Educational Resources Information Center

Magis, David; De Boeck, Paul

2012-01-01

The identification of differential item functioning (DIF) is often performed by means of statistical approaches that consider the raw scores as proxies for the ability trait level. One of the most popular approaches, the Mantel-Haenszel (MH) method, belongs to this category. However, replacing the ability level by the simple raw score is a source…

Prevalence and risk factors for depression and anxiety in Chinese patients with Parkinson disease.

PubMed

Cui, Shi-Shuang; Du, Juan-Juan; Fu, Rao; Lin, Yi-Qi; Huang, Pei; He, Ya-Chao; Gao, Chao; Wang, Hua-Long; Chen, Sheng-Di

2017-11-22

Anxiety and depression are common in Parkinson disease and both are important determinants of quality of life in patients. Several risk factors are identified but few research have investigated general and Parkinson's disease (PD)-specific factors comprehensively. The aim of this work was to explore PD-specific and -non-specific risk factors for PD with depression or anxiety. A cross-sectional survey was performed in 403 patients with PD. Multivariate logistic analysis was used to investigate the prevalence and risk factors for the depression and anxiety in PD. The data of patients included demographic information, medicine history, disease duration, age at onset (AAO), family history, anti-parkinsonism drug, modified Hoehn and Yahr staging (H-Y) stage, scales of motor and non-motor symptoms and substantia nigra (SN) echogenic areas. 403 PD patients were recruited in the study. Depression and anxiety were present in 11.17% and 25.81% respectively. Marital status, tumor, higher Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS) II score, dyskinesia, higher Hamilton Anxiety Rating Scale (HARS) score and lower the Parkinson's disease sleep scale (PDSS) score were associated with depression in PD. female gender, higher rapid eye movement behavior disorder Questionnaire-Hong Kong (RBD-HK) score, higher Hamilton Deprssion Rating Scale (HAMD) score, higher the scale for outcomes in PD for autonomic symptoms (SCOPA-AUT)score and larger SN echogenic areas were associated with anxiety. Neither depression nor anxiety was related to any anti-parkinsonism drugs. The prevalence of depression and anxiety in the current PD patients was 11.17% and 25.81% respectively. Disease of tumor, currently having no partner, severer motor function, dyskinesia, poorer sleep quality and anxiety were risk factors for PD with depression. Female, depression, rapid eye movement behavior disorder (RBD), autonomic dysfunction and larger SN area were risk factors for PD with anxiety.

Daily mood ratings via text message as a proxy for clinic based depression assessment.

PubMed

Aguilera, Adrian; Schueller, Stephen M; Leykin, Yan

2015-04-01

Mobile and automated technologies are increasingly becoming integrated into mental health care and assessment. The purpose of this study was to determine how automated daily mood ratings are related to the Patient Health Questionnaire-9 (PHQ-9), a standard measure in the screening and tracking of depressive symptoms. There was a significant relationship between daily mood scores and PHQ-9 scores, and between one-week average mood scores and PHQ-9 scores, controlling for linear change in depression scores. PHQ-9 scores were not related to the average of two week mood ratings. This study also constructed models using variance, maximum, and minimum values of mood ratings in the preceding week and two-week periods as predictors of PHQ-9. None of these variables significantly predicted PHQ-9 scores when controlling for daily mood ratings and the corresponding averages for each period. This study only assessed patients who were in treatment for depression, therefore findings might not generalize to the relationship between text message mood ratings for those who are not depressed. The sample was also predominantly Spanish speaking and low-income making generalizability to other populations uncertain. Our results show that automatic text message based mood ratings can be a clinically useful proxy for the PHQ-9. Importantly, this approach avoids the limitations of the PHQ-9 administration, which include length and a higher requirement for literacy. Copyright © 2015 Elsevier B.V. All rights reserved.

Role of Advance Care Planning in Proxy Decision Making Among Individuals With Dementia and Their Family Caregivers.

PubMed

Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni

2016-01-01

Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families. Copyright 2016, SLACK Incorporated.

Can we derive an 'exchange rate' between descriptive and preference-based outcome measures for stroke? Results from the transfer to utility (TTU) technique

PubMed Central

Mortimer, Duncan; Segal, Leonie; Sturm, Jonathan

2009-01-01

Background Stroke-specific outcome measures and descriptive measures of health-related quality of life (HRQoL) are unsuitable for informing decision-makers of the broader consequences of increasing or decreasing funding for stroke interventions. The quality-adjusted life year (QALY) provides a common metric for comparing interventions over multiple dimensions of HRQoL and mortality differentials. There are, however, many circumstances when – because of timing, lack of foresight or cost considerations – only stroke-specific or descriptive measures of health status are available and some indirect means of obtaining QALY-weights becomes necessary. In such circumstances, the use of regression-based transformations or mappings can circumvent the failure to elicit QALY-weights by allowing predicted weights to proxy for observed weights. This regression-based approach has been dubbed 'Transfer to Utility' (TTU) regression. The purpose of the present study is to demonstrate the feasibility and value of TTU regression in stroke by deriving transformations or mappings from stroke-specific and generic but descriptive measures of health status to a generic preference-based measure of HRQoL in a sample of Australians with a diagnosis of acute stroke. Findings will quantify the additional error associated with the use of condition-specific to generic transformations in stroke. Methods We used TTU regression to derive empirical transformations from three commonly used descriptive measures of health status for stroke (NIHSS, Barthel and SF-36) to a preference-based measure (AQoL) suitable for attaching QALY-weights to stroke disease states; based on 2570 observations drawn from a sample of 859 patients with stroke. Results Transformations from the SF-36 to the AQoL explained up to 71.5% of variation in observed AQoL scores. Differences between mean predicted and mean observed AQoL scores from the 'severity-specific' item- and subscale-based SF-36 algorithms and from the 'moderate to severe' index- and item-based Barthel algorithm were neither clinically nor statistically significant when 'low severity' SF-36 transformations were used to predict AQoL scores for patients in the NIHSS = 0 and NIHSS = 1–5 subgroups and when 'moderate to severe severity' transformations were used to predict AQoL scores for patients in the NIHSS ≥ 6 subgroup. In contrast, the difference between mean predicted and mean observed AQoL scores from the NIHSS algorithms and from the 'low severity' Barthel algorithms reached levels that could mask minimally important differences on the AQoL scale. Conclusion While our NIHSS to AQoL transformations proved unsuitable for most applications, our findings demonstrate that stroke-relevant outcome measures such as the SF-36 and Barthel Index can be adequately transformed to preference-based measures for the purposes of economic evaluation. PMID:19371444

A Scoring System to Predict the Severity of Hirschsprung Disease at Diagnosis and its Correlation with Molecular Genetics.

PubMed

Núñez-Ramos, Raquel; Fernández, Raquel M; González-Velasco, Miguel; Ruiz-Contreras, Jesús; Galán-Gómez, Enrique; Núñez-Núñez, Ramón; Borrego, Salud

2016-01-27

Hirschsprung disease (HSCR) has a wide range of severity. There are non-severe forms treated conservatively until surgery and severe forms that require an early stoma and prolonged hospitalization. Our objective was to establish a clinical scoring system to predict the severity of HSCR and to evaluate the possible existence of a clinical-genetic correlation. We carried out a retrospective observational study including all HSCR cases treated in our hospital. The sample was divided into severe and non-severe disease according to the number of surgical procedures, hospitalization time and episodes of enterocolitis. The proposed score was applied at diagnosis, and the sensitivity, specificity and optimal cut-point were determined. We conducted a prospective molecular study of RET, EDNRB and EDN3 on all patients, as well as SOX10 in Waardenburg Syndrome type 4 forms. Among the 42 patients treated between 1983 and 2013, 15 met the severe disease criteria. This group had a higher mean score (13.15±2.36) than the non-severe group (8.15±2.13; p<0.001). A score {greater than or equal to}11 had a sensitivity of 87% and a specificity of 81% in detecting the severe cases. Causative mutations were identified in 12 patients, 8 of them in the severe group (p=0.015). Most of these mutations (75%) were located in the RET proto-oncogene. The proposed scoring system enables the early selection of patients with severe behaviour of HSCR. A value {greater than or equal to}11 showed good sensitivity and specificity for this purpose. Causative mutations were identified in more than 50% of patients who met the criteria for severe disease.

A Scoring System to Predict the Severity of Hirschsprung Disease at Diagnosis and Its Correlation With Molecular Genetics.

PubMed

Núñez-Ramos, Raquel; Fernández, Raquel M; González-Velasco, Miguel; Ruiz-Contreras, Jesús; Galán-Gómez, Enrique; Núñez-Núñez, Ramón; Borrego, Salud

2017-01-01

Objectives Hirschsprung disease (HSCR) has a wide range of severity. There are nonsevere forms treated conservatively until surgery and severe forms that require an early stoma and prolonged hospitalization. Our objective was to establish a clinical scoring system to predict the severity of HSCR and to evaluate the possible existence of a clinical-genetic correlation. Methods We carried out a retrospective observational study including all HSCR cases treated in our hospital. The sample was divided into severe and nonsevere disease according to the number of surgical procedures, hospitalization time, and episodes of enterocolitis. The proposed score was applied at diagnosis, and the sensitivity, specificity, and optimal cut-point were determined. We conducted a prospective molecular study of RET, EDNRB, and EDN3 on all patients, as well as SOX10 in Waardenburg Syndrome type 4 forms. Results Among the 42 patients treated between 1983 and 2013, 15 met the severe disease criteria. This group had a higher mean score (13.15 ± 2.36) than the nonsevere group (8.15 ± 2.13; p < 0.001). A score ≥11 had a sensitivity of 87% and a specificity of 81% in detecting the severe cases. Causative mutations were identified in 12 patients, 8 of them in the severe group ( p = 0.015). Most of these mutations (75%) were located in the RET proto-oncogene. Conclusion The proposed scoring system enables the early selection of patients with severe behavior of HSCR. A value ≥11 showed good sensitivity and specificity for this purpose. Causative mutations were identified in more than 50% of patients who met the criteria for severe disease.

Magnetic resonance index of activity (MaRIA) and Clermont score are highly and equally effective MRI indices in detecting mucosal healing in Crohn's disease.

PubMed

Buisson, Anthony; Pereira, Bruno; Goutte, Marion; Reymond, Maud; Allimant, Christophe; Obritin-Guilhen, Hélène; Bommelaer, Gilles; Hordonneau, Constance

2017-11-01

Magnetic resonance index of activity (MaRIA) and Clermont score are currently the two main MRI indices that have been validated compared to endoscopy in Crohn's disease (CD). To compare the accuracy of MaRIA and Clermont score in assessing CD mucosal healing. Fourty-four CD patients underwent prospectively and consecutively MRI and colonoscopy. Considering 207 segments, MaRIA>7 and Clermont score>8.4 demonstrated substantial accuracy to detect endoscopic ulcerations (73.9% and 74.0%, respectively) and presented with high specificity (82.1% and 81.3%) and high negative predictive value (NPV) (82.1% and 82.4%) for MaRIA and Clermont score, respectively. The sensitivity for detecting deep ulcerations was 90.9% for both MaRIA>11 and Clermont score>12.5, with a specificity of 82.0% and 80.0%, respectively. Among 44 patients, deep MRI remission predicted mucosal healing with specificity=85.3% and NPV=85.3% according to Barcelona criteria (no segmental MaRIA>7), and specificity=88.2% and NPV=85.7% according to Clermont criteria (no segmental Clermont score>8.4). In addition, MRI remission predicted mucosal healing with specificity=76.5% and NPV=86.7% according to Barcelona criteria (no segmental MaRIA>11), and specificity=79.4% and NPV=84.4% according to Clermont criteria (no segmental Clermont score>12.5). MaRIA and Clermont score are equally effective in detecting CD endoscopic ulcerations supporting their use as therapeutic endpoints. Copyright © 2017 Editrice Gastroenterologica Italiana S.r.l. Published by Elsevier Ltd. All rights reserved.

Cognitive Reserve in Healthy Aging and Alzheimer's Disease: A Meta-Analysis of fMRI Studies.

PubMed

Colangeli, Stefano; Boccia, Maddalena; Verde, Paola; Guariglia, Paola; Bianchini, Filippo; Piccardi, Laura

2016-08-01

Cognitive reserve (CR) has been defined as the ability to optimize or maximize performance through differential recruitment of brain networks. In the present study, we aimed at providing evidence for a consistent brain network underpinning CR in healthy and pathological aging. To pursue this aim, we performed a coordinate-based meta-analysis of 17 functional magnetic resonance imaging studies on CR proxies in healthy aging, Alzheimer's disease (AD), and mild cognitive impairment (MCI). We found that different brain areas were associated with CR proxies in healthy and pathological aging. A wide network of areas, including medial and lateral frontal areas, that is, anterior cingulate cortex and dorsolateral prefrontal cortex, as well as precuneus, was associated with proxies of CR in healthy elderly patients. The CR proxies in patients with AD and amnesic-MCI were associated with activation in the anterior cingulate cortex. These results were discussed hypothesizing the existence of possible compensatory mechanisms in healthy and pathological aging. © The Author(s) 2016.

Representation of layer-counted proxy records as probability densities on error-free time axes

NASA Astrophysics Data System (ADS)

Boers, Niklas; Goswami, Bedartha; Ghil, Michael

2016-04-01

Time series derived from paleoclimatic proxy records exhibit substantial dating uncertainties in addition to the measurement errors of the proxy values. For radiometrically dated proxy archives, Goswami et al. [1] have recently introduced a framework rooted in Bayesian statistics that successfully propagates the dating uncertainties from the time axis to the proxy axis. The resulting proxy record consists of a sequence of probability densities over the proxy values, conditioned on prescribed age values. One of the major benefits of this approach is that the proxy record is represented on an accurate, error-free time axis. Such unambiguous dating is crucial, for instance, in comparing different proxy records. This approach, however, is not directly applicable to proxy records with layer-counted chronologies, as for example ice cores, which are typically dated by counting quasi-annually deposited ice layers. Hence the nature of the chronological uncertainty in such records is fundamentally different from that in radiometrically dated ones. Here, we introduce a modification of the Goswami et al. [1] approach that is specifically designed for layer-counted proxy records, instead of radiometrically dated ones. We apply our method to isotope ratios and dust concentrations in the NGRIP core, using a published 60,000-year chronology [2]. It is shown that the further one goes into the past, the more the layer-counting errors accumulate and lead to growing uncertainties in the probability density sequence for the proxy values that results from the proposed approach. For the older parts of the record, these uncertainties affect more and more a statistically sound estimation of proxy values. This difficulty implies that great care has to be exercised when comparing and in particular aligning specific events among different layer-counted proxy records. On the other hand, when attempting to derive stochastic dynamical models from the proxy records, one is only interested in the relative changes, i.e. in the increments of the proxy values. In such cases, only the relative (non-cumulative) counting errors matter. For the example of the NGRIP records, we show that a precise estimation of these relative changes is in fact possible. References: [1] Goswami et al., Nonlin. Processes Geophys. (2014) [2] Svensson et al., Clim. Past (2008)

12 CFR 192.255 - What must the form of proxy include?

Code of Federal Regulations, 2012 CFR

2012-01-01

... include? The form of proxy must include all of the following: (a) A statement in bold face type stating.... (d) The phrase “Revocable Proxy” in bold face type (at least 18 point). (e) A description of any... management will vote the proxy in accordance with the member's specifications. (j) A statement in bold face...

Quality-of-life perception by Parkinson's disease patients and caregivers.

PubMed

Balash, Y; Korczyn, A D; Knaani, J; Migirov, A A; Gurevich, T

2017-08-01

The quality-of-life (QoL) perception by Parkinson's disease (PD) patients and their caregivers (CG) has not been studied in depth. To examine patient/proxy agreements on the PD QoL Questionnaire (PDQ-39), the Scale of Quality of Life of Care-Givers (SQLC) and the Multidimensional Caregiver Strain Index (MCSI). Patients with PD and their CG completed the above-mentioned questionnaires about themselves and each other. The intraclass correlations between their scores (paired t test) were compared. Twelve patient-CG pairs were studied. Agreements for QoL items were strong and comparable for the total scores of the PDQ-39, SQLC and MCSI questionnaires (75.4% ± 14%; 78.1% ± 14.1% and 78.2% ± 14.3%, respectively). Agreements ranged from moderate to strong (0.57-0.88, P≤.05) for the patients' physical condition (PDQ-39 items 3, 5, 6, 8, 12-15, 23, 24, 35), mental concentration (item 31) and depression (item 17). Disagreements were apparent in 20%-25% of the pairs and were particularly significant for PDQ-39 items #33 and #25 (embarrassment of patients in public and distressing dreams or hallucinations), in which the CG gave higher scores than the patients. Agreements between patients with PD and CG were generally good for most, but not all, of the PDQ-39, SQLC and MCSI domains. © 2017 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Evaluating and Optimizing Online Advertising: Forget the Click, but There Are Good Proxies.

PubMed

Dalessandro, Brian; Hook, Rod; Perlich, Claudia; Provost, Foster

2015-06-01

Online systems promise to improve advertisement targeting via the massive and detailed data available. However, there often is too few data on exactly the outcome of interest, such as purchases, for accurate campaign evaluation and optimization (due to low conversion rates, cold start periods, lack of instrumentation of offline purchases, and long purchase cycles). This paper presents a detailed treatment of proxy modeling, which is based on the identification of a suitable alternative (proxy) target variable when data on the true objective is in short supply (or even completely nonexistent). The paper has a two-fold contribution. First, the potential of proxy modeling is demonstrated clearly, based on a massive-scale experiment across 58 real online advertising campaigns. Second, we assess the value of different specific proxies for evaluating and optimizing online display advertising, showing striking results. The results include bad news and good news. The most commonly cited and used proxy is a click on an ad. The bad news is that across a large number of campaigns, clicks are not good proxies for evaluation or for optimization: clickers do not resemble buyers. The good news is that an alternative sort of proxy performs remarkably well: observed visits to the brand's website. Specifically, predictive models built based on brand site visits-which are much more common than purchases-do a remarkably good job of predicting which browsers will make a purchase. The practical bottom line: evaluating and optimizing campaigns using clicks seems wrongheaded; however, there is an easy and attractive alternative-use a well-chosen site-visit proxy instead.

Perthes Disease: The Quality and Reliability of Information on the Internet.

PubMed

Nassiri, Mujtaba; Bruce-Brand, Robert A; O'Neill, Francis; Chenouri, Shojaeddin; Curtin, Paul

2015-01-01

Research has shown that up to 89% of parents used the Internet to seek health information regarding their child's medical condition. Much of the information on the Internet is valuable; however, the quality of health information is variable and unregulated. The aim of this study was to evaluate the quality and content of information about Perthes disease on the Internet using recognized scoring systems, identification of quality markers, and describe a novel specific score. We searched the top 3 search engines (Google, Yahoo!, and Bing) for the following keywords: "Perthes disease." Forty-five unique Web sites were identified. The Web sites were then categorized by type and assessed using the DISCERN score, the Journal of the American Medical Association (JAMA) benchmark criteria, and a novel Perthes-specific Content score. The presence of the Health On the Net (HON) code, a reported quality assurance marker, was noted. Of the Web sites analyzed, the Majority were Governmental and Nonprofit Organizations (NPO) (37.8%), followed by commercial Web sites (22.2%). Only 6 of the Web sites were HONcode certified. The mean DISCERN score was 53.1 (SD=9.0). The Governmental and NPO Web sites had the highest overall DISCERN scores followed closely by Physician Web sites. The mean JAMA benchmark criteria score was 2.1 (SD=1.2). Nine Web sites had maximal scores and the Academic Web sites had the highest overall JAMA benchmark scores. DISCERN scores, JAMA benchmark scores, and Perthes-specific Content scores were all greater for Web sites that bore the HONcode seal. The quality of information available online regarding Perthes disease is of variable quality. Governmental and NPO Web sites predominate and also provide higher quality content. The HONcode seal is a reliable indicator of Web site quality. Physicians should recommend the HONcode seal to their patients as a reliable indicator of Web site quality or, better yet, refer patients to sites they have personally reviewed. Supplying parents with a guide to health information on the Internet will help exclude Web sites as sources of misinformation.

Development of six PROMIS pediatrics proxy-report item banks

PubMed Central

2012-01-01

Background Pediatric self-report should be considered the standard for measuring patient reported outcomes (PRO) among children. However, circumstances exist when the child is too young, cognitively impaired, or too ill to complete a PRO instrument and a proxy-report is needed. This paper describes the development process including the proxy cognitive interviews and large-field-test survey methods and sample characteristics employed to produce item parameters for the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric proxy-report item banks. Methods The PROMIS pediatric self-report items were converted into proxy-report items before undergoing cognitive interviews. These items covered six domains (physical function, emotional distress, social peer relationships, fatigue, pain interference, and asthma impact). Caregivers (n = 25) of children ages of 5 and 17 years provided qualitative feedback on proxy-report items to assess any major issues with these items. From May 2008 to March 2009, the large-scale survey enrolled children ages 8-17 years to complete the self-report version and caregivers to complete the proxy-report version of the survey (n = 1548 dyads). Caregivers of children ages 5 to 7 years completed the proxy report survey (n = 432). In addition, caregivers completed other proxy instruments, PedsQL™ 4.0 Generic Core Scales Parent Proxy-Report version, PedsQL™ Asthma Module Parent Proxy-Report version, and KIDSCREEN Parent-Proxy-52. Results Item content was well understood by proxies and did not require item revisions but some proxies clearly noted that determining an answer on behalf of their child was difficult for some items. Dyads and caregivers of children ages 5-17 years old were enrolled in the large-scale testing. The majority were female (85%), married (70%), Caucasian (64%) and had at least a high school education (94%). Approximately 50% had children with a chronic health condition, primarily asthma, which was diagnosed or treated within 6 months prior to the interview. The PROMIS proxy sample scored similar or better on the other proxy instruments compared to normative samples. Conclusions The initial calibration data was provided by a diverse set of caregivers of children with a variety of common chronic illnesses and racial/ethnic backgrounds. The PROMIS pediatric proxy-report item banks include physical function (mobility n = 23; upper extremity n = 29), emotional distress (anxiety n = 15; depressive symptoms n = 14; anger n = 5), social peer relationships (n = 15), fatigue (n = 34), pain interference (n = 13), and asthma impact (n = 17). PMID:22357192

The study of Cutaneous Lupus Erythematosus Disease Area and Severity Index in Indian patients with systemic lupus erythematosus.

PubMed

Salphale, P; Danda, D; Chandrashekar, L; Peter, D; Jayaseeli, N; George, R

2011-12-01

The Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) is a newly described tool used to assess the activity of and damage caused by cutaneous lupus erythematosus (CLE). There is a paucity of data on CLASI from the Indian subcontinent. We sought to determine the applicability of CLASI in specific lesions of CLE in patients with systemic lupus erythematosus (SLE) attending a tertiary care hospital in India. In this prospective, cross-sectional study, 93 patients of SLE with cutaneous lesions were recruited. CLASI activity and damage scores of lupus erythematosus (LE)-specific skin lesions were done in 75 patients with SLE. The mean CLASI activity score was 15.4 ± 9.4 (range 0-39) and the mean damage score was 6.87 ± 7.75 (range 0-30). Higher mean CLASI activity scores were seen in patients with a combination of acute, subacute and chronic CLE and in those with widespread lesions. Patients with longstanding disease and long duration of skin lesions had higher damage scores. This study shows that CLASI is an effective tool to assess cutaneous activity of LE-specific lesions, and the damage caused by them, in Indian patients.

Detecting Intervention Effects in a Cluster-Randomized Design Using Multilevel Structural Equation Modeling for Binary Responses

ERIC Educational Resources Information Center

Cho, Sun-Joo; Preacher, Kristopher J.; Bottge, Brian A.

2015-01-01

Multilevel modeling (MLM) is frequently used to detect group differences, such as an intervention effect in a pre-test--post-test cluster-randomized design. Group differences on the post-test scores are detected by controlling for pre-test scores as a proxy variable for unobserved factors that predict future attributes. The pre-test and post-test…

British isles lupus assessment group 2004 index is valid for assessment of disease activity in systemic lupus erythematosus

PubMed Central

Yee, Chee-Seng; Farewell, Vernon; Isenberg, David A; Rahman, Anisur; Teh, Lee-Suan; Griffiths, Bridget; Bruce, Ian N; Ahmad, Yasmeen; Prabu, Athiveeraramapandian; Akil, Mohammed; McHugh, Neil; D'Cruz, David; Khamashta, Munther A; Maddison, Peter; Gordon, Caroline

2007-01-01

Objective To determine the construct and criterion validity of the British Isles Lupus Assessment Group 2004 (BILAG-2004) index for assessing disease activity in systemic lupus erythematosus (SLE). Methods Patients with SLE were recruited into a multicenter cross-sectional study. Data on SLE disease activity (scores on the BILAG-2004 index, Classic BILAG index, and Systemic Lupus Erythematosus Disease Activity Index 2000 [SLEDAI-2K]), investigations, and therapy were collected. Overall BILAG-2004 and overall Classic BILAG scores were determined by the highest score achieved in any of the individual systems in the respective index. Erythrocyte sedimentation rates (ESRs), C3 levels, C4 levels, anti–double-stranded DNA (anti-dsDNA) levels, and SLEDAI-2K scores were used in the analysis of construct validity, and increase in therapy was used as the criterion for active disease in the analysis of criterion validity. Statistical analyses were performed using ordinal logistic regression for construct validity and logistic regression for criterion validity. Sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) were calculated. Results Of the 369 patients with SLE, 92.7% were women, 59.9% were white, 18.4% were Afro-Caribbean and 18.4% were South Asian. Their mean ± SD age was 41.6 ± 13.2 years and mean disease duration was 8.8 ± 7.7 years. More than 1 assessment was obtained on 88.6% of the patients, and a total of 1,510 assessments were obtained. Increasing overall scores on the BILAG-2004 index were associated with increasing ESRs, decreasing C3 levels, decreasing C4 levels, elevated anti-dsDNA levels, and increasing SLEDAI-2K scores (all P < 0.01). Increase in therapy was observed more frequently in patients with overall BILAG-2004 scores reflecting higher disease activity. Scores indicating active disease (overall BILAG-2004 scores of A and B) were significantly associated with increase in therapy (odds ratio [OR] 19.3, P < 0.01). The BILAG-2004 and Classic BILAG indices had comparable sensitivity, specificity, PPV, and NPV. Conclusion These findings show that the BILAG-2004 index has construct and criterion validity. PMID:18050213

A pragmatic approach for mortality prediction after surgery in infective endocarditis: optimizing and refining EuroSCORE.

PubMed

Fernández-Hidalgo, N; Ferreria-González, I; Marsal, J R; Ribera, A; Aznar, M L; de Alarcón, A; García-Cabrera, E; Gálvez-Acebal, J; Sánchez-Espín, G; Reguera-Iglesias, J M; De La Torre-Lima, J; Lomas, J M; Hidalgo-Tenorio, C; Vallejo, N; Miranda, B; Santos-Ortega, A; Castro, M A; Tornos, P; García-Dorado, D; Almirante, B

2018-03-03

To simplify and optimize the ability of EuroSCORE I and II to predict early mortality after surgery for infective endocarditis (IE). Multicentre retrospective study (n = 775). Simplified scores, eliminating irrelevant variables, and new specific scores, adding specific IE variables, were created. The performance of the original, recalibrated and specific EuroSCOREs was assessed by Brier score, C-statistic and calibration plot in bootstrap samples. The Net Reclassification Index was quantified. Recalibrated scores including age, previous cardiac surgery, critical preoperative state, New York Heart Association >I, and emergent surgery (EuroSCORE I and II); renal failure and pulmonary hypertension (EuroSCORE I); and urgent surgery (EuroSCORE II) performed better than the original EuroSCOREs (Brier original and recalibrated: EuroSCORE I: 0.1770 and 0.1667; EuroSCORE II: 0.2307 and 0.1680). Performance improved with the addition of fistula, staphylococci and mitral location (EuroSCORE I and II) (Brier specific: EuroSCORE I 0.1587, EuroSCORE II 0.1592). Discrimination improved in specific models (C-statistic original, recalibrated and specific: EuroSCORE I: 0.7340, 0.7471 and 0.7728; EuroSCORE II: 0.7442, 0.7423 and 0.7700). Calibration improved in both EuroSCORE I models (intercept 0.295, slope 0.829 (original); intercept -0.094, slope 0.888 (recalibrated); intercept -0.059, slope 0.925 (specific)) but only in specific EuroSCORE II model (intercept 2.554, slope 1.114 (original); intercept -0.260, slope 0.703 (recalibrated); intercept -0.053, slope 0.930 (specific)). Net Reclassification Index was 5.1% and 20.3% for the specific EuroSCORE I and II CONCLUSIONS: The use of simplified EuroSCORE I and EuroSCORE II models in IE with the addition of specific variables may lead to simpler and more accurate models. Copyright © 2018 European Society of Clinical Microbiology and Infectious Diseases. Published by Elsevier Ltd. All rights reserved.

A systematic review of patient inflammatory bowel disease information resources on the World Wide Web.

PubMed

Bernard, André; Langille, Morgan; Hughes, Stephanie; Rose, Caren; Leddin, Desmond; Veldhuyzen van Zanten, Sander

2007-09-01

The Internet is a widely used information resource for patients with inflammatory bowel disease, but there is variation in the quality of Web sites that have patient information regarding Crohn's disease and ulcerative colitis. The purpose of the current study is to systematically evaluate the quality of these Web sites. The top 50 Web sites appearing in Google using the terms "Crohn's disease" or "ulcerative colitis" were included in the study. Web sites were evaluated using a (a) Quality Evaluation Instrument (QEI) that awarded Web sites points (0-107) for specific information on various aspects of inflammatory bowel disease, (b) a five-point Global Quality Score (GQS), (c) two reading grade level scores, and (d) a six-point integrity score. Thirty-four Web sites met the inclusion criteria, 16 Web sites were excluded because they were portals or non-IBD oriented. The median QEI score was 57 with five Web sites scoring higher than 75 points. The median Global Quality Score was 2.0 with five Web sites achieving scores of 4 or 5. The average reading grade level score was 11.2. The median integrity score was 3.0. There is marked variation in the quality of the Web sites containing information on Crohn's disease and ulcerative colitis. Many Web sites suffered from poor quality but there were five high-scoring Web sites.

Reliability and validity of the Chinese version of the Pediatric Quality Of Life InventoryTM (PedsQLTM) 3.0 neuromuscular module in children with Duchenne muscular dystrophy.

PubMed

Hu, Jun; Jiang, Li; Hong, Siqi; Cheng, Li; Kong, Min; Ye, Yuanzhen

2013-03-15

The Pediatric Quality of Life Inventory(TM) (PedsQL(TM)) is a widely used instrument to measure pediatric health-related quality of life (HRQOL) in children aged 2 to 18 years. The current study aimed to evaluate the reliability and validity of the Chinese version of the PedsQL(TM) 3.0 Neuromuscular Module in children with Duchenne muscular dystrophy (DMD). The PedsQL(TM) 3.0 Neuromuscular Module was translated into Chinese following PedsQL(TM) Measurement Model Translation Methodology. The Chinese version scale was administered to 56 children with DMD and their parents, and the psychometric properties were evaluated. The missing value percentages for each item of the Chinese version scale ranged from 0.00% to 0.54%. Internal consistency reliability approached or exceeded the minimum reliability standard of α = 0.7 (child α = 0.81, parent α = 0.86). Test-retest reliability was satisfactory, with intraclass correlation coefficients (ICCs) of 0.66 for children and 0.88 for parents (P < 0.01). Correlation coefficients between iteims and their hypothesized subscales were higher than those with other subscales (P < 0.05). The subscale of "About My/My Child's Neuromuscular Disease" significantly related to mobility and stair climbing status (Child t = 2.21, Parent t = 2.83, P < 0.05). The inter-correlations among the Chinese version of the PedsQL(TM) 3.0 Neuromuscular Module and the PedsQL(TM) 4.0 Generic Core Scales had medium to large effect sizes (P < 0.05). The child self-report scores were in moderate agreement with the parent proxy-report scores (ICC = 0.51, P < 0.05). The Chinese version of the PedsQLTM 3.0 Neuromuscular Module has acceptable psychometric properties. It is a reliable measure of disease-specific HRQOL in Chinese children with DMD.

Quantifying cognition and behavior in normal aging, mild cognitive impairment, and Alzheimer's disease

NASA Astrophysics Data System (ADS)

Giraldo, Diana L.; Sijbers, Jan; Romero, Eduardo

2017-11-01

The diagnosis of Alzheimer's disease (AD) and mild cognitive impairment (MCI) is based on neuropsychological evaluation of the patient. Different cognitive and memory functions are assessed by a battery of tests that are composed of items devised to specifically evaluate such upper functions. This work aims to identify and quantify the factors that determine the performance in neuropsychological evaluation by conducting an Exploratory Factor Analysis (EFA). For this purpose, using data from the Alzheimer's Disease Neuroimaging Initiative (ADNI), EFA was applied to 67 item scores taken from the baseline neuropsychological battery of the three phases of ADNI study. The found factors are directly related to specific brain functions such as memory, behavior, orientation, or verbal fluency. The identification of factors is followed by the calculation of factor scores given by weighted linear combinations of the items scores.

Comparison of self and proxy ratings for voice handicap index and motor-related quality-of-life of individuals with Parkinson's disease.

PubMed

Parveen, Sabiha; Goberman, Alexander M

2017-04-01

Quality-of-life (QoL) consists of health, psychological well-being and communication-related domains. Due to the heterogeneous nature of Parkinson disease (PD), it is important to examine effects of different domains including motor and cognitive performance or motor and speech performance among the same set of individuals. Existing studies indicate mixed findings due to use of different QoL measures and lack of general consensus regarding QoL components. The present study examined self and proxy ratings for 20 individuals with PD on Voice Handicap Index (VHI) and PDQ-39 mobility to determine effects on speech and motor-related QoL, respectively. There was good level of agreement between self and proxy ratings for PDQ-39 mobility ratings alone. In addition, no overall group differences were found for self and proxy ratings of VHI and PDQ-39 mobility ratings, thus indicating similar perceptions by individuals with PD and their communication partners for speech and motor-related changes associated with PD. Further, no significant correlations between speech and motor-related QoL were found, thereby suggesting these domains to be independent of each other. The present study indicates the need to consider both self and proxy reports to understand the impact of PD on a person's overall functioning.

PedsQL Neurofibromatosis Type 1 Module for children, adolescents and young adults: feasibility, reliability, and validity.

PubMed

Nutakki, Kavitha; Varni, James W; Swigonski, Nancy L

2018-04-01

The objective of the present study was to report on the measurement properties of the Pediatric Quality of Life Inventory (PedsQL) Neurofibromatosis Type 1 Module for pediatric patients ages 5-25 from the perspectives of patients and parents. The 104-item PedsQL NF1 Module and 23-item PedsQL Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents (343 families). Patients were diagnosed with NF1 using the National Institutes of Health diagnostic criteria. In addition to a Total Scale Score, 18 unidimensional scales were derived measuring skin itch bother, skin sensations, pain, pain impact, pain management, cognitive functioning, speech, fine motor, balance, vision, perceived physical appearance, communication, worry, treatment anxiety, medicines, stomach discomfort, constipation, and diarrhea. The PedsQL NF1 Module Scales evidenced excellent feasibility, excellent reliability for the Total Scale Scores (patient self-report α = 0.98; parent proxy-report α = 0.98), and good to excellent reliability for the 18 individual scales (patient self-report α = 0.71-0.96; parent proxy-report α = 0.73-0.98). Intercorrelations with the Generic Core Scales supported construct validity. Factor analysis supported the unidimensionality of the 18 individual scales. The PedsQL NF1 Module Scales demonstrated acceptable to excellent measurement properties, and may be utilized as standardized metrics to assess NF1-specific symptoms and problems in clinical research and practice in children, adolescents, and young adults.

Value of the CHA2DS2-VASc score and Fabry-specific score for predicting new-onset or recurrent stroke/TIA in Fabry disease patients without atrial fibrillation.

PubMed

Liu, Dan; Hu, Kai; Schmidt, Marie; Müntze, Jonas; Maniuc, Octavian; Gensler, Daniel; Oder, Daniel; Salinger, Tim; Weidemann, Frank; Ertl, Georg; Frantz, Stefan; Wanner, Christoph; Nordbeck, Peter

2018-05-24

To evaluate potential risk factors for stroke or transient ischemic attacks (TIA) and to test the feasibility and efficacy of a Fabry-specific stroke risk score in Fabry disease (FD) patients without atrial fibrillation (AF). FD patients often experience cerebrovascular events (stroke/TIA) at young age. 159 genetically confirmed FD patients without AF (aged 40 ± 14 years, 42.1% male) were included, and risk factors for stroke/TIA events were determined. All patients were followed up over a median period of 60 (quartiles 35-90) months. The pre-defined primary outcomes included new-onset or recurrent stroke/TIA and all-cause death. Prior stroke/TIA (HR 19.97, P < .001), angiokeratoma (HR 4.06, P = .010), elevated creatinine (HR 3.74, P = .011), significant left ventricular hypertrophy (HR 4.07, P = .017), and reduced global systolic strain (GLS, HR 5.19, P = .002) remained as independent risk predictors of new-onset or recurrent stroke/TIA in FD patients without AF. A Fabry-specific score was established based on above defined risk factors, proving somehow superior to the CHA 2 DS 2 -VASc score in predicting new-onset or recurrent stroke/TIA in this cohort (AUC 0.87 vs. 0.75, P = .199). Prior stroke/TIA, angiokeratoma, renal dysfunction, left ventricular hypertrophy, and global systolic dysfunction are independent risk factors for new-onset or recurrent stroke/TIA in FD patients without AF. It is feasible to predict new or recurrent cerebral events with the Fabry-specific score based on the above defined risk factors. Future studies are warranted to test if FD patients with high risk for new-onset or recurrent stroke/TIA, as defined by the Fabry-specific score (≥ 2 points), might benefit from antithrombotic therapy. Clinical trial registration HEAL-FABRY (evaluation of HEArt invoLvement in patients with FABRY disease, NCT03362164).

The PedsQL multidimensional fatigue scale in pediatric obesity: feasibility, reliability and validity.

PubMed

Varni, James W; Limbers, Christine A; Bryant, William P; Wilson, Don P

2010-01-01

The PedsQL (Pediatric Quality of Life Inventory) is a modular instrument designed to measure health-related quality of life (HRQOL) and disease-specific symptoms in children and adolescents. The PedsQL Multidimensional Fatigue Scale was designed as a child self-report and parent proxy-report generic symptom-specific instrument to measure fatigue in pediatric patients. The objective of the present study was to determine the feasibility, reliability, and validity of the PedsQL Multidimensional Fatigue Scale in pediatric obesity. The 18-item PedsQL Multidimensional Fatigue Scale (General Fatigue, Sleep/Rest Fatigue, and Cognitive Fatigue domains) and the PedsQL 4.0 Generic Core Scales were completed by 41 pediatric patients with a physician-diagnosis of obesity and 43 parents from a hospital-based Pediatric Endocrinology Clinic. The PedsQL Multidimensional Fatigue Scale evidenced minimal missing responses (1.6%, child report; 0.5%, parent report), achieved excellent reliability for the Total Fatigue Scale Score (alpha = 0.90 child report, 0.90 parent report), distinguished between pediatric patients with obesity and healthy children, and was significantly correlated with the PedsQL 4.0 Generic Core Scales supporting construct validity. Pediatric patients with obesity experienced fatigue comparable with pediatric patients receiving cancer treatment, demonstrating the relative severity of their fatigue symptoms. The results demonstrate the measurement properties of the PedsQL Multidimensional Fatigue Scale in pediatric obesity. The findings suggest that the PedsQL Multidimensional Fatigue Scale may be utilized in the standardized evaluation of fatigue in pediatric patients with obesity.

Validation of the Auto-Inflammatory Diseases Activity Index (AIDAI) for hereditary recurrent fever syndromes

PubMed Central

Piram, Maryam; Koné-Paut, Isabelle; Lachmann, Helen J; Frenkel, Joost; Ozen, Seza; Kuemmerle-Deschner, Jasmin; Stojanov, Silvia; Simon, Anna; Finetti, Martina; Sormani, Maria Pia; Martini, Alberto; Gattorno, Marco; Ruperto, Nicolino

2014-01-01

Objectives To validate the Auto-Inflammatory Diseases Activity Index (AIDAI) in the four major hereditary recurrent fever syndromes (HRFs): familial Mediterranean fever (FMF), mevalonate kinase deficiency (MKD), tumour necrosis factor receptor-associated periodic syndrome (TRAPS) and cryopyrin-associated periodic syndromes (CAPS). Methods In 2010, an international collaboration established the content of a disease activity tool for HRFs. Patients completed a 1-month prospective diary with 12 yes/no items before a clinical appointment during which their physician assessed their disease activity by a questionnaire. Eight international experts in auto-inflammatory diseases evaluated the patient's disease activity by a blinded web evaluation and a nominal group technique consensus conference, with their consensus judgement considered the gold standard. Sensitivity/specificity/accuracy measures and the ability of the score to discriminate active from inactive patients via the best cut-off score were calculated by a receiver operating characteristic analysis. Results Consensus was achieved for 98/106 (92%) cases (39 FMF, 35 CAPS, 14 TRAPS and 10 MKD), with 26 patients declared as having inactive disease and 72 as having active disease. The median total AIDAI score was 14 (range=0–175). An AIDAI cut-off score ≥9 discriminated active from inactive patients, with sensitivity/specificity/accuracy of 89%/92%/90%, respectively, and an area under the curve of 98% (95% CI 96% to 100%). Conclusions The AIDAI score is a valid and simple tool for assessing disease activity in FMF/MKD/TRAPS/CAPS. This tool is easy to use in clinical practice and has the potential to be used as the standard efficacy measure in future clinical trials. PMID:24026675

Older adults’ attitudes toward noncompetent subjects participating in Alzheimers research

PubMed Central

Karlawish, Jason; Rubright, Jonathan; Casarett, David; Cary, Mark; TenHave, Thomas; Sankar, Pamela

2008-01-01

Objective Since research that enrolls noncompetent patients with Alzheimers disease and does not present potential benefit to subjects is the source of substantial ethical controversy, we assessed willingness to have a proxy for research decision making, and, for each of two Alzheimers disease biomarker studies (minimal risk blood draw and a greater than minimal risk blood draw and lumbar puncture), willingness to grant an advance consent, and willingness to grant a proxy leeway over advance consent. Methods Face to face survey of 538 persons 65 and over who resided in the Southeastern Pennsylvania region Results The majority 83% (445/538) granted advance consent to a blood draw study and nearly half to a blood draw plus lumbar puncture 259 (48%). Most persons (96%) were willing to identify a proxy for research decision making and most were willing to grant their proxy leeway over their advance consent: blood draw 434 (81%), and 375 (70%) blood draw plus lumbar puncture. Combining the preferences for advance consent and leeway, the proportion who would permit being enrolled in the blood draw and spinal fluid sample studies were, respectively, 92% (497/538) and 75% (404/538). Multi-variate models showed that willingness to be enrolled in research was most strongly associated with a favorable attitude about biomedical research. Conclusions Older adults generally support enrolling noncompetent persons with Alzheimers disease into research that does not present a benefit to subjects. Willingness to grant their proxy leeway over advance consent and a favorable attitude about biomedical research substantially explain this willingness. PMID:18923066

Psychometric properties of the Chinese version of the pediatric quality of life inventory 4.0 Generic core scales among children with short stature.

PubMed

Wu, Hua-hong; Li, Hui; Gao, Qian

2013-05-30

The quality of life in children with short stature was rarely studied in China, so we explore these children's quality of life and psychometric properties of the Chinese version of the Pediatric Quality of Life Inventory 4.0(PedsQL4.0) Generic Core Scales among children with short stature. A total of 201 children aged 8 ~ 18 years from the short stature clinic and other clinics of capital institute of pediatrics attended this study. The questionnaires include demographic information and PedsQL4.0 generic core scales. According to children's height, we divided them into three groups: short stature, normal short and normal group, then compared the score of scales by the height category. Moreover, we analyzed the reliability and validity of PedsQL4.0 generic core scales in these 201 children. The child self-report total PedsQL mean score, for the short stature, normal short and normal groups were 77.77 ± 9.69, 83.50 ± 8.56 and 87.36 ± 7.23; the parent-proxy total PedsQL mean score were 77.62 ± 10.50, 82.69 ± 8.35 and 84.91 ± 9.96 respectively. Both for children self- and parent proxy-reports, the Cronbach's α coefficients of total scale, psychosocial health and social functioning ranged between 0.74 and 0.80, it ranged between 0.51 and 0.66 in other dimensions. For child self-reports, the correlation coefficients of 17 items' scores (total 23 items) with the scores of dimensions they belong to were above 0.5, with the highest 0.759; the other 6 items' correlation coefficients were below 0.5, with the lowest 0.280. For parent proxy-reports, the correlation coefficients of 19 items' scores with the scores of dimension they belong to were above 0.5, with the highest 0.793, the other 4 items' below 0.5 with the lowest 0.243. The quality of life in children with short stature is worse than their normal peers by Peds QL4.0 generic core scales, the statues of their quality of life was positively related to their stature.

Psychometric properties of the Chinese version of the Pediatric Quality of Life Inventory 4.0 generic core scales.

PubMed

Hao, Yuantao; Tian, Qi; Lu, Yiyun; Chai, Yiming; Rao, Shaoqi

2010-10-01

The aim of this study was to evaluate the psychometric properties of the Chinese version of the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) generic core scales. The standard procedure of cross-culture adaptation was used to develop the Chinese version PedsQL4.0. We enrolled 1583 healthy children and 1335 pediatric patients (aged from 5 to 18 years) and 325 proxies. The psychometric properties of the measure were evaluated. The subscales of physical functioning, social functioning and psychosocial showed alpha coefficients above 0.7 for self-report in healthy children and the total pediatric patients, and all coefficients were higher than 0.7 for proxy report for all subscales. There were higher correlations between items and hypothesized subscales than with other subscales. Healthy children reported higher scores than pediatric patients in all subscales. Confirmatory factor analysis showed that some of the indices of goodness of fit did not reach the standard of acceptable construct validity. Moderate to high correlations were found between self-reported and proxy-reported scores. The Chinese version PedsQL4.0 has acceptable psychometric properties except the construct validity tested by confirmatory factor analysis and the internal reliability for self-report in pediatric patients with migraine or Gilles and Tourette's syndrome.

Development of a parent version of the Manchester-Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF)

PubMed Central

Hutchings, Hayley A; Upton, Penney; Cheung, Wai-Yee; Maddocks, Alison; Eiser, Christine; Williams, John G; Russell, Ian T; Jackson, Sonia; Jenney, Meriel EM

2008-01-01

Background Although it is now widely endorsed that children should as far as possible rate their own health related quality of life (HRQL), there are situations where proxy information on child HRQL may be useful, especially where a child is too ill or young to provide their own HRQL assessment. There is limited availability of generic HRQL scales that have a parallel child and parent version and that are reliable, valid, brief, comprehensible and suitable for use in UK populations. The aims of this study were therefore to develop and validate a parent version of the anglicised Manchester-Minneapolis Quality of Life child form (MMQL-UK (CF)) and to determine the level of association between the child and parent versions of this form. Methods This study was undertaken concurrently with the anglicisation and validation of the MMQL, a measure of HRQL developed for use with children in North America. At that time, no parent version existed, so the MMQL form for children (MMQL-UK (CF)) was used as the basis for the development of the MMQL-UK parent form (PF). The sample included a control group of healthy children and their parents and five exemplar groups; children diagnosed with asthma, diabetes or inflammatory bowel disease and their parents, children in remission from cancer and their parents and children in public care and their carers. Consistency of the MMQL-UK (PF) components were assessed by calculating Cronbach's alpha. Validation of the parent questionnaire was undertaken by comparing MMQL-UK (PF) component scores with comparable components on the proxy PedsQL™ quality of life scales, comparing MMQL-UK (PF) component scores between parents of healthy and chronic disease children and by comparison of component scores from children and their parents or carers. Reproducibility and responsiveness were assessed by retesting parents by follow-up questionnaires. Results A total of 874 children (completing MMQL-UK (CF)) and 572 parents or carers (completing MMQL-UK (PF)) took part in the study. The internal consistency of all the MMQL-UK (PF) components exceeding the accepted criterion of 0.70 and the construct validity was good with moderate correlations being evident between comparable components of the MMQL-UK (PF) and the proxy PedsQL™. Discriminant validity was demonstrated with significant differences being identified between parents of healthy children and those with chronic conditions. Intra-class correlations exceeded 0.65 for all MMQL-UK (PF) components demonstrating good reproducibility. Weak to moderate levels of responsiveness were demonstrated for all but social functioning. The MMQL-UK (PF) showed moderate parent-child correlation with the MMQL-UK (CF) for all components. The best correlations were seen for those components measuring the same construct (Pearson's r ranged from 0.31 to 0.61, p < 0.01 for equivalent components). Conclusion The MMQL-UK (PF) showed moderate to good correlations with the MMQL-UK (CF) component scores. The MMQL-UK (PF) will be of use when comparing child and parent/carer perception of the impact of a child's condition on their HRQL or where the child is too ill or young to provide their own report. PMID:18307771

Facial-affect recognition deficit as a predictor of different aspects of social-communication impairment in traumatic brain injury.

PubMed

Rigon, Arianna; Turkstra, Lyn S; Mutlu, Bilge; Duff, Melissa C

2018-05-01

To examine the relationship between facial-affect recognition and different aspects of self- and proxy-reported social-communication impairment following moderate-severe traumatic brain injury (TBI). Forty-six adults with chronic TBI (>6 months postinjury) and 42 healthy comparison (HC) adults were administered the La Trobe Communication Questionnaire (LCQ) Self and Other forms to assess different aspects of communication competence and the Emotion Recognition Test (ERT) to measure their ability to recognize facial affects. Individuals with TBI underperformed HC adults in the ERT and self-reported, as well as were reported by close others, as having more communication problems than did HC adults. TBI group ERT scores were significantly and negatively correlated with LCQ-Other (but not LCQ-Self) scores (i.e., participants with lower emotion-recognition scores were rated by close others as having more communication problems). Multivariate regression analysis revealed that adults with higher ERT scores self-reported more problems with disinhibition-impulsivity and partner sensitivity and had fewer other-reported problems with disinhibition-impulsivity and conversational effectiveness. Our findings support growing evidence that emotion-recognition deficits play a role in specific aspects of social-communication outcomes after TBI and should be considered in treatment planning. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Unpacking cultural factors in adaptation to type 2 diabetes mellitus.

PubMed

Walsh, Michele E; Katz, Murray A; Sechrest, Lee

2002-01-01

Race and ethnicity are used as predictors of outcome in health services research. Often, however, race and ethnicity serve merely as proxies for the resources, values, beliefs, and behaviors (ie, ecology and culture) that are assumed to correlate with them. "Unpacking" proxy variables-directly measuring the variables believed to underlie them-would provide a more reliable and more interpretable way of looking at group differences. To assess the use of a measure of ecocultural domains that is correlated with ethnicity in accounting for variance in adherence, quality of life, clinical outcomes, and service utilization. A cross-sectional observational study. Twenty-six Hispanic and 29 non-Hispanic white VA primary care patients with type 2 diabetes mellitus. The independent variables were patient ethnicity and a summed score of ecocultural domains representing patient adaptation to illness. The outcomes were adherence to treatment, health-related quality of life, clinical indicators of disease management, and utilization of urgent health care services. Patient adaptation was correlated with ethnicity and accounted for more variance in all outcomes than did ethnicity. The unique variance accounted for by adaptation was small to moderate, whereas that accounted for by ethnicity was negligible. It is possible to identify and measure ecocultural domains that better account for variation in important health services outcomes for patients with type 2 diabetes than does ethnicity. Going beyond the study of ethnic differences alone and measuring the correlated factors that play a role in disease management can advance understanding of the phenomena involved in this variation and provide better direction for service design and delivery.

Hemiparesis and Epilepsy Are Associated With Worse Reported Health Status Following Unilateral Stroke in Children

PubMed Central

Smith, Sabrina E.; Vargas, Gray; Cucchiara, Andrew J.; Zelonis, Sarah J.; Beslow, Lauren A.

2015-01-01

BACKGROUND Perinatal and childhood stroke result in neurological impairment in the majority of survivors, but less is known about patient and parent perception of function following stroke in children. Our aim was to characterize parent-proxy and child-reported health status in children following unilateral arterial ischemic stroke or intraparenchymal hemorrhage. METHODS Fifty-nine children 2–18 years (30 girls, 29 boys) with unilateral arterial ischemic stroke or spontaneous intraparenchymal hemorrhage at least 6 months before evaluation were enrolled from a single center. The PedsQL version 4.0 Generic Short Form and PedsQL version 3.0 Cerebral Palsy Module were administered to childhood stroke subjects and parents. Generic PedsQL Inventory scores were compared between children with stroke and published data from healthy children. Reported health status scores for children with varying degrees of hemiparesis were compared. RESULTS Children with stroke had lower reported health status scores on the Generic PedsQL Inventory than healthy children. Children with moderate-severe hemiparesis had worse scores than children without hemiparesis on several measures of the Cerebral Palsy Module as reported by both parents and children. The parents of children with epilepsy reported worse scores on several measures compared with children without epilepsy, and the parent scores were lower on several measures for children with lower intelligence quotients. Agreement between parent and child scores was better on the Cerebral Palsy Module than on the Generic Inventory. CONCLUSIONS Children with stroke have worse reported health status than healthy controls. Degree of hemiparesis, epilepsy, and lower intelligence quotient affect reported health status on some measures. Agreement between parent-proxy and child scores ranges from slight to good which suggests that both provide useful information. PMID:25559938

Hemiparesis and epilepsy are associated with worse reported health status following unilateral stroke in children.

PubMed

Smith, Sabrina E; Vargas, Gray; Cucchiara, Andrew J; Zelonis, Sarah J; Beslow, Lauren A

2015-04-01

Perinatal and childhood stroke result in neurological impairment in the majority of survivors, but less is known about patient and parent perception of function following stroke in children. Our aim was to characterize parent-proxy and child-reported health status in children following unilateral arterial ischemic stroke or intraparenchymal hemorrhage. Fifty-nine children 2-18 years (30 girls, 29 boys) with unilateral arterial ischemic stroke or spontaneous intraparenchymal hemorrhage at least 6 months before evaluation were enrolled from a single center. The PedsQL version 4.0 Generic Short Form and PedsQL version 3.0 Cerebral Palsy Module were administered to childhood stroke subjects and parents. Generic PedsQL Inventory scores were compared between children with stroke and published data from healthy children. Reported health status scores for children with varying degrees of hemiparesis were compared. Children with stroke had lower reported health status scores on the Generic PedsQL Inventory than healthy children. Children with moderate-severe hemiparesis had worse scores than children without hemiparesis on several measures of the Cerebral Palsy Module as reported by both parents and children. The parents of children with epilepsy reported worse scores on several measures compared with children without epilepsy, and the parent scores were lower on several measures for children with lower intelligence quotients. Agreement between parent and child scores was better on the Cerebral Palsy Module than on the Generic Inventory. Children with stroke have worse reported health status than healthy controls. Degree of hemiparesis, epilepsy, and lower intelligence quotient affect reported health status on some measures. Agreement between parent-proxy and child scores ranges from slight to good which suggests that both provide useful information. Copyright © 2015 Elsevier Inc. All rights reserved.

A preliminary score for the assessment of disease activity in hereditary recurrent fevers: results from the AIDAI (Auto-Inflammatory Diseases Activity Index) Consensus Conference

PubMed Central

Piram, Maryam; Frenkel, Joost; Gattorno, Marco; Ozen, Seza; Lachmann, Helen J; Goldbach-Mansky, Raphaela; Hentgen, Véronique; Neven, Bénédicte; Stankovic Stojanovic, Katia; Simon, Anna; Kuemmerle-Deschner, Jasmin; Hoffman, Hal; Stojanov, Silvia; Duquesne, Agnès; Pillet, Pascal; Martini, Alberto; Pouchot, Jacques; Koné-Paut, Isabelle

2012-01-01

Background The systemic autoinflammatory disorders (SAID) share many clinical manifestations, albeit with variable patterns, intensity and frequency. A common definition of disease activity would be rational and useful in the management of these lifelong diseases. Moreover, standardised disease activity scores are required for the assessment of new therapies in constant development. The aim of this study was to develop preliminary activity scores for familial Mediterranean fever, mevalonate kinase deficiency, tumour necrosis factor receptor-1-associated periodic syndrome and cryopyrin-associated periodic syndromes (CAPS). Methods The study was conducted using two well-recognised consensus formation methods: the Delphi technique and the nominal group technique. The results from a two-step survey and data from parent/patient interviews were used as preliminary data to develop the agenda for a consensus conference to build a provisional scoring system. Results 24 of 65 experts in SAID from 20 countries answered the web questionnaire and 16 attended the consensus conference. There was consensus agreement to develop separate activity scores for each disease but with a common format based on patient diaries. Fever and disease-specific clinical variables were scored according to their severity. A final score was generated by summing the score of all the variables divided by the number of days over which the diary was completed. Scores varied from 0 to 16 (0–13 in CAPS). These scores were developed for the purpose of clinical studies but could be used in clinical practice. Conclusion Using widely recognised consensus formation techniques, preliminary scores were obtained to measure disease activity in four main SAID. Further prospective validation study of this instrument will follow. PMID:21081528

An illustrative overview of semi-quantitative MRI scoring of knee osteoarthritis: lessons learned from longitudinal observational studies.

PubMed

Roemer, F W; Hunter, D J; Crema, M D; Kwoh, C K; Ochoa-Albiztegui, E; Guermazi, A

2016-02-01

To introduce the most popular magnetic resonance imaging (MRI) osteoarthritis (OA) semi-quantitative (SQ) scoring systems to a broader audience with a focus on the most commonly applied scores, i.e., the MOAKS and WORMS system and illustrate similarities and differences. While the main structure and methodology of each scoring system are publicly available, the core of this overview will be an illustrative imaging atlas section including image examples from multiple OA studies applying MRI in regard to different features assessed, show specific examples of different grades and point out pitfalls and specifics of SQ assessment including artifacts, blinding to time point of acquisition and within-grade evaluation. Similarities and differences between different scoring systems are presented. Technical considerations are followed by a brief description of the most commonly utilized SQ scoring systems including their responsiveness and reliability. The second part is comprised of the atlas section presenting illustrative image examples. Evidence suggests that SQ assessment of OA by expert MRI readers is valid, reliable and responsive, which helps investigators to understand the natural history of this complex disease and to evaluate potential new drugs in OA clinical trials. Researchers have to be aware of the differences and specifics of the different systems to be able to engage in imaging assessment and interpretation of imaging-based data. SQ scoring has enabled us to explain associations of structural tissue damage with clinical manifestations of the disease and with morphological alterations thought to represent disease progression. Copyright © 2015 Osteoarthritis Research Society International. Published by Elsevier Ltd. All rights reserved.

An illustrative overview of semi-quantitative MRI scoring of knee osteoarthritis: Lessons learned from longitudinal observational studies

PubMed Central

Roemer, Frank W.; Hunter, David J.; Crema, Michel D.; Kwoh, C. Kent; Ochoa-Albiztegui, Elena; Guermazi, Ali

2015-01-01

Objective To introduce the most popular magnetic resonance imaging (MRI) osteoarthritis (OA) semi-quantitative (SQ) scoring systems to a broader audience with a focus on the most commonly applied scores, i.e. the MOAKS and WORMS system and illustrate similarities and differences. Design While the main structure and methodology of each scoring system are publicly available, the core of this overview will be an illustrative imaging atlas section including image examples from multiple osteoarthritis studies applying MRI in regard to different features assessed, show specific examples of different grades and point out pitfalls and specifics of SQ assessment including artifacts, blinding to time point of acquisition and within-grade evaluation. Results Similarities and differences between different scoring systems are presented. Technical considerations are followed by a brief description of the most commonly utilized SQ scoring systems including their responsiveness and reliability. The second part is comprised of the atlas section presenting illustrative image examples. Conclusions Evidence suggests that SQ assessment of OA by expert MRI readers is valid, reliable and responsive, which helps investigators to understand the natural history of this complex disease and to evaluate potential new drugs in OA clinical trials. Researchers have to be aware of the differences and specifics of the different systems to be able to engage in imaging assessment and interpretation of imaging-based data. SQ scoring has enabled us to explain associations of structural tissue damage with clinical manifestations of the disease and with morphological alterations thought to represent disease progression. PMID:26318656

Sex Differences in Reported Pain Across 11,000 Patients Captured in Electronic Medical Records

PubMed Central

Ruau, David; Liu, Linda Y.; Clark, J. David; Angst, Martin S.; Butte, Atul J.

2011-01-01

Clinically recorded pain scores are abundant in patient health records but are rarely used in research. The use of this information could help improve clinical outcomes. For example, a recent report by the Institute of Medicine stated that ineffective use of clinical information contributes to under-treatment of patient subpopulations — especially women. This study used diagnosis-associated pain scores from a large hospital database to document sex differences in reported pain. We used de-identified electronic medical records from Stanford Hospital and Clinics for more than 72,000 patients. Each record contained at least one disease-associated pain score. We found over 160,000 pain scores in more than 250 primary diagnoses, and analyzed differences in disease-specific pain reported by men and women. After filtering for diagnoses with minimum encounter numbers, we found diagnosis-specific sex differences in reported pain. The most significant differences occurred in patients with disorders of the musculoskeletal, circulatory, respiratory and digestive systems, followed by infectious diseases, and injury and poisoning. We also discovered sex-specific differences in pain intensity in previously unreported diseases, including disorders of the cervical region, and acute sinusitis (p = 0.01, 0.017, respectively). Pain scores were collected during hospital encounters. No information about the use of pre-encounter over-the-counter medications was available. To our knowledge, this is the largest data-driven study documenting sex differences of disease-associated pain. It highlights the utility of EMR data to corroborate and expand on results of smaller clinical studies. Our findings emphasize the need for future research examining the mechanisms underlying differences in pain. PMID:22245360

A child chronic cough-specific quality of life measure: development and validation.

PubMed

Newcombe, Peter A; Sheffield, Jeanie K; Petsky, Helen L; Marchant, Julie M; Willis, Carol; Chang, Anne B

2016-08-01

Quality of life (QoL) measures are an important patient-relevant outcome measure for clinical studies. Cough is the most common symptom that results in new medical consultations. Although adult and parent-proxy cough-specific QoL instruments have been shown to be a useful cough outcome measure, no suitable cough-specific QoL measure for children with chronic cough exists. We report on the statistical properties of a chronic cough-specific QoL (CC-QoL) questionnaire for children. 130 children (median age 10 years, IQR 8-12 years; 65 girls) participated. A preliminary 37-item version was developed from conversations with children with chronic cough (>4 weeks). Children also completed generic QoL questionnaires (Pediatric QoL Inventory 4.0 (PedsQL4.0), Spence Children's Anxiety Scale (SCAS)) and cough diary scores. The clinical impact method of item reduction resulted in 16 items that had excellent internal consistency (Cronbach's α=0.94) among these items and also within each domain. Evidence for construct and criterion validity was established with significant correlations between CC-QoL subscales with cough scores, PedsQL and SCAS scores. CC-QoL scores were sensitive to change following an intervention and significant differences were noted between those children coughing and those who had ceased coughing. Minimum important difference (MID) for overall and domain CC-QoL ranged from 0.37-1.36 (distribution-based approach) to 1.11-1.58 (anchor-based approach). Chronic cough significantly impacts the QoL of children. The CC-QoL is a reliable, valid and sensitive to change outcome measure that assesses QoL from the child's perspective. Pending data from a confirmatory cohort, a MID for the CC-QoL of 1.1 is recommended when evaluating health status change. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Patient-rated versus proxy-rated cognitive and functional measures in older adults

PubMed Central

Howland, Molly; Allan, Kevin C; Carlton, Caitlin E; Tatsuoka, Curtis; Smyth, Kathleen A; Sajatovic, Martha

2017-01-01

Objectives Patients with cognitive impairment may have difficulty reporting their functional and cognitive abilities, which are important clinical outcomes. Health care proxies may be able to corroborate patient self-reports. Several studies reported discrepancy between patient and proxy ratings, though the literature is sparse on changes over time of these ratings. Our goals in this 12-month study were to compare patient and proxy reports on functioning, cognition, and everyday executive function, and to further elucidate correlates of patient–proxy discrepancy. Methods This was a prospective cohort study of individuals older than 70 years who ranged from having no cognitive impairment to having moderate dementia who had a proxy available to complete instruments at baseline (N=76). Measurements included Alzheimer’s Disease Cooperative Study–Activities of Daily Living Inventory (ADCS-ADLI), Neuro-QOL Executive Function, PROMIS Applied Cognition (PROMIS-Cog), Mini-Mental State Examination (MMSE), and Geriatric Depression Scale. Results Patient- and proxy-rated ADCS-ADLI were correlated at baseline and at 1-year follow-up. Patient and proxy ratings were discrepant on Neuro-QOL Executive Function and PROMIS-Cog. Greater patient–proxy discrepancy on PROMIS-Cog was associated with younger age and less depression, and greater patient–proxy discrepancy on Neuro-QOL Executive Function was associated with less depression and worse cognitive impairment. Patient–proxy discrepancy increased over time for everyday executive function. Changes in proxy-rated but not patient-rated ADCS-ADLI correlated with MMSE changes. Conclusion Patients and proxies generally agree in reporting on activities of daily living. Patient and proxy reports differ in their respective evaluation of cognitive functioning and everyday executive function. Ratings from both sources may be preferred for these two domains, though studies using gold standard measures are necessary. It is important that clinicians are aware of the differences between patient and proxy perspective to create an accurate clinical picture and guide treatment. PMID:28352208

Peripheral artery questionnaire improves ankle brachial index screening in symptomatic patients with peripheral artery disease.

PubMed

Kim, B-H; Cho, K-I; Spertus, J; Park, Y-H; Je, H-G; Shin, M-S; Lee, J-H; Jang, J-S

2014-12-01

The peripheral artery questionnaire (PAQ) is a disease-specific health status measure of patients with peripheral artery disease (PAD). Whether the PAQ scores are associated with a PAD diagnosis among patients with symptoms suspicious for PAD is unknown and could help increase the pretest probability of ankle brachial index (ABI) screening among patients with suspicious symptoms. The PAQ was completed by 567 patients evaluated for potential intermittent claudication at six tertiary centres. Demographics, medical history, physical examination findings and the PAQ domain scores were compared with ABI. A diagnostic threshold < 0.90 for a PAD diagnosis was assessed with a ROC of PAQ scores. The correlation between the PAQ Summary Score and ABI was also calculated. The PAQ Summary Score was significantly lower in patients with low ABI as compared with those having a normal ABI (37.6 ± 19.0 vs. 70.1 ± 22.7, p < 0.001). The PAQ Summary Score and ABI were highly correlated (r = 0.56, p < 0.001) and the optimal PAQ Summary Score for predicting low ABI was 50.3 (AUC = 0.86, sensitivity 80.3%, specificity 78.3%). The PAQ Summary Score was associated with an increased likelihood of PAD in patients with suspected PAD symptoms, and a low summary score (≤ 50.3) was an optimal threshold for predicting PAD among patients referred for ABI. © 2014 John Wiley & Sons Ltd.

A single microfocus (5% or less) of Gleason 6 prostate cancer at biopsy--can we predict adverse pathological outcomes?

PubMed

Thong, Alan E; Shikanov, Sergey; Katz, Mark H; Gofrit, Ofer N; Eggener, Scott; Zagaja, Gregory P; Shalhav, Arieh L; Zorn, Kevin C

2008-12-01

Patients with Gleason score 6 microfocal prostate cancer, defined as 5% or less in 1 biopsy core, are often considered to have favorable disease. Few studies have addressed clinical parameters that predict pathological upgrading or up staging at radical prostatectomy. From a prospective database of 1,271 consecutive robot assisted laparoscopic prostatectomies performed from 2003 to 2008 patients with Gleason score 6 microfocal prostate cancer were identified. Adverse pathological outcome was defined as any upgrading and/or up staging on prostatectomy pathological findings. Multivariate logistic regression was used to evaluate the ability of patient age, clinical stage, the total number of biopsy cores, preoperative prostate specific antigen, prostate volume and pathological prostate specific antigen density to predict adverse pathological outcomes. A total of 192 patients with a median age of 59 years (range 42 to 73) were identified with Gleason score 6 prostate cancer involving 5% or less of 1 biopsy core, including 177 (92%) with clinical T1c disease. Mean +/- SD preoperative prostate specific antigen was 6.0 +/- 3.9 ng/ml (range 0.8 to 35). Overall 42 patients (22%) had adverse pathological outcomes, including upgrading in 35 (18%) and up staging in 16 (8%). Multivariate logistic regression revealed that age more than 65 years and pathological prostate specific antigen density greater than 0.20 ng/ml/gm were predictive of an increased risk of adverse pathological results (p = 0.0081 and 0.0169, respectively). While a microfocus of Gleason score 6 prostate cancer on biopsy is commonly considered low risk disease, there was a greater than 1/5 risk of pathological upgrading and/or up staging. Patients with Gleason score 6 microfocal prostate cancer should be counseled that they may harbor more aggressive disease, especially when pretreatment clinical risk factors are present, such as advanced age or high clinical prostate specific antigen density.

[Scoring systems in intensive care medicine : principles, models, application and limits].

PubMed

Fleig, V; Brenck, F; Wolff, M; Weigand, M A

2011-10-01

Scoring systems are used in all diagnostic areas of medicine. Several parameters are evaluated and rated with points according to their value in order to simplify a complex clinical situation with a score. The application ranges from the classification of disease severity through determining the number of staff for the intensive care unit (ICU) to the evaluation of new therapies under study conditions. Since the introduction of scoring systems in the 1980's a variety of different score models has been developed. The scoring systems that are employed in intensive care and are discussed in this article can be categorized into prognostic scores, expenses scores and disease-specific scores. Since the introduction of compulsory recording of two scoring systems for accounting in the German diagnosis-related groups (DRG) system, these tools have gained more importance for all intensive care physicians. Problems remain in the valid calculation of scores and interpretation of the results.

10-Minute Delayed Recall from the Modified Mini-Mental State Test Predicts Alzheimer’s Disease Pathology

PubMed Central

Lyness, Scott A.; Lee, Ae Young; Zarow, Chris; Teng, Evelyn L.; Chui, Helena C.

2014-01-01

We compared the sensitivity and specificity of two delayed recall scores from the Modified Mini-Mental State (3MS) test with consensus clinical diagnosis to differentiate cognitive impairment due to Alzheimer’s disease (AD) versus non-AD pathologies. At a memory disorders clinic, 117 cognitively impaired patients were administered a baseline 3MS test and received a contemporaneous consensus clinical diagnosis. Their brains were examined after death about 5 years later. Using logistic regression with forward selection to predict pathologically defined AD versus non-AD, 10-min delayed recall entered first (p = 0.001), followed by clinical diagnosis (p = 0.02); 1-min delayed recall did not enter. 10-min delayed recall scores ≤4 (score range = 0–9) were 87% sensitive and 47% specific in predicting AD pathology; consensus clinical diagnosis was 82% sensitive and 45% specific. For the 57 patients whose initial Mini-Mental State Examination scores were ≥19 (the median), 3MS 10-min delayed recall scores ≤4 showed some loss of sensitivity (80%) but a substantial gain in specificity (77%). In conclusion, 10-min delayed recall score on the brief 3MS test distinguished between AD versus non-AD pathology about 5 years before death at least as well as consensus clinical diagnosis that requires much more comprehensive information and complex deliberation. PMID:24240637

10-minute delayed recall from the modified mini-mental state test predicts Alzheimer's disease pathology.

PubMed

Lyness, Scott A; Lee, Ae Young; Zarow, Chris; Teng, Evelyn L; Chui, Helena C

2014-01-01

We compared the sensitivity and specificity of two delayed recall scores from the Modified Mini-Mental State (3MS) test with consensus clinical diagnosis to differentiate cognitive impairment due to Alzheimer's disease (AD) versus non-AD pathologies. At a memory disorders clinic, 117 cognitively impaired patients were administered a baseline 3MS test and received a contemporaneous consensus clinical diagnosis. Their brains were examined after death about 5 years later. Using logistic regression with forward selection to predict pathologically defined AD versus non-AD, 10-min delayed recall entered first (p = 0.001), followed by clinical diagnosis (p = 0.02); 1-min delayed recall did not enter. 10-min delayed recall scores ≤4 (score range = 0-9) were 87% sensitive and 47% specific in predicting AD pathology; consensus clinical diagnosis was 82% sensitive and 45% specific. For the 57 patients whose initial Mini-Mental State Examination scores were ≥19 (the median), 3MS 10-min delayed recall scores ≤4 showed some loss of sensitivity (80%) but a substantial gain in specificity (77%). In conclusion, 10-min delayed recall score on the brief 3MS test distinguished between AD versus non-AD pathology about 5 years before death at least as well as consensus clinical diagnosis that requires much more comprehensive information and complex deliberation.

Role of serial multiparametric magnetic resonance imaging in prostate cancer active surveillance

PubMed Central

Vos, Larissa J; Janoski, Michele; Wachowicz, Keith; Yahya, Atiyah; Boychak, Oleksandr; Amanie, John; Pervez, Nadeem; Parliament, Matthew B; Pituskin, Edith; Fallone, B Gino; Usmani, Nawaid

2016-01-01

AIM: To examine whether addition of 3T multiparametric magnetic resonance imaging (mpMRI) to an active surveillance protocol could detect aggressive or progressive prostate cancer. METHODS: Twenty-three patients with low risk disease were enrolled on this active surveillance study, all of which had Gleason score 6 or less disease. All patients had clinical assessments, including digital rectal examination and prostate specific antigen (PSA) testing, every 6 mo with annual 3T mpMRI scans with gadolinium contrast and minimum sextant prostate biopsies. The MRI images were anonymized of patient identifiers and clinical information and each scan underwent radiological review without the other results known. Descriptive statistics for demographics and follow-up as well as the sensitivity and specificity of mpMRI to identify prostate cancer and progressive disease were calculated. RESULTS: During follow-up (median 24.8 mo) 11 of 23 patients with low-risk prostate cancer had disease progression and were taken off study to receive definitive treatment. Disease progression was identified through upstaging of Gleason score on subsequent biopsies for all 11 patients with only 2 patients also having a PSA doubling time of less than 2 years. All 23 patients had biopsy confirmed prostate cancer but only 10 had a positive index of suspicion on mpMRI scans at baseline (43.5% sensitivity). Aggressive disease prediction from baseline mpMRI scans had satisfactory specificity (81.8%) but low sensitivity (58.3%). Twenty-two patients had serial mpMRI scans and evidence of disease progression was seen for 3 patients all of whom had upstaging of Gleason score on biopsy (30% specificity and 100% sensitivity). CONCLUSION: Addition of mpMRI imaging in active surveillance decision making may help in identifying aggressive disease amongst men with indolent prostate cancer earlier than traditional methods. PMID:27158428

Promoting advance care planning among community-based older adults: A randomized controlled trial.

PubMed

Bravo, Gina; Trottier, Lise; Arcand, Marcel; Boire-Lavigne, Anne-Marie; Blanchette, Danièle; Dubois, Marie-France; Guay, Maryse; Lane, Julie; Hottin, Paule; Bellemare, Suzanne

2016-11-01

To test an intervention designed to motivate older adults in documenting their healthcare preferences in advance, and to guide proxies in making hypothetical decisions that match those of the older adult. The trial involved 235 older adults, of which half were assisted in communicating their wishes to their proxy. Hypothetical vignettes were used at baseline and twice after the intervention to elicit older adults' preferences and assess their proxy's ability to predict them. By the end of the trial, 80% of older adults allocated to the experimental group had documented their wishes. Changes over time in mean accuracy scores did not differ between groups for any hypothetical situations, except when limiting the sample to dyads that were highly discordant at baseline. The intervention motivated a large proportion of older adults to express their preferences but had little effect on proxies' ability to predict them. Educational tools developed for this study will assist healthcare providers in helping older adults to record their wishes in advance. Clients must be informed of the challenge of making substitute decisions and of the need to discuss the amount of leeway the proxy should have in interpreting expressed wishes. Copyright © 2016 The Author(s). Published by Elsevier Ireland Ltd.. All rights reserved.

Evaluation of a clinical dehydration scale in children requiring intravenous rehydration.

PubMed

Kinlin, Laura M; Freedman, Stephen B

2012-05-01

To evaluate the reliability and validity of a previously derived clinical dehydration scale (CDS) in a cohort of children with gastroenteritis and evidence of dehydration. Participants were 226 children older than 3 months who presented to a tertiary care emergency department and required intravenous rehydration. Reliability was assessed at treatment initiation, by comparing the scores assigned independently by a trained research nurse and a physician. Validity was assessed by using parameters reflective of disease severity: weight gain, baseline laboratory results, willingness of the physician to discharge the patient, hospitalization, and length of stay. Interobserver reliability was moderate, with a weighted κ of 0.52 (95% confidence interval [CI] 0.41, 0.63). There was no correlation between CDS score and percent weight gain, a proxy measure of fluid deficit (Spearman correlation coefficient = -0.03; 95% CI -0.18, 0.12). There were, however, modest and statistically significant correlations between CDS score and several other parameters, including serum bicarbonate (Pearson correlation coefficient = -0.35; 95% CI -0.46, -0.22) and length of stay (Pearson correlation coefficient = 0.24; 95% CI 0.11, 0.36). The scale's discriminative ability was assessed for the outcome of hospitalization, yielding an area under the receiver operating characteristic curve of 0.65 (95% CI 0.57, 0.73). In children administered intravenous rehydration, the CDS was characterized by moderate interobserver reliability and weak associations with objective measures of disease severity. These data do not support its use as a tool to dictate the need for intravenous rehydration or to predict clinical course.

The Use of Deer Vehicle Accidents as a Proxy for Measuring the Degree of Interaction Between Human and Deer Populations and Its Correlation With the Incidence Rate of Lyme Disease

PubMed Central

Wiznia, Daniel H.; Christos, Paul J.; LaBonte, Andrew M.

2014-01-01

The study described in this article examined the relationship between the incidence rate of deer vehicle accidents (DVAs), a proxy for measuring the interaction between populations of humans and deer, and human Lyme disease incidence rate. The authors also examined the relationship between deer population density and human Lyme incidence rate. They analyzed data from Connecticut’s Department of Environmental Protection and the Department of Public Health from 1999 through 2008 by deer management zone (DMZ) and town. For DVA incidence rate versus Lyme incidence rate for both DMZs and towns, most of the correlation coefficients computed yearly were moderate to strong and all of the p-values were significant. A weak correlation was observed between deer population density and Lyme disease incidence rate by DMZ. The authors propose DVAs as a proxy for measuring the interaction between coexisting populations of humans and deer. The authors’ study suggests that additional investigations of DVAs and their relationship to Lyme disease to further assess the utility of public health interventions are warranted. PMID:23621054

Validation of a proxy for estrogen receptor status in breast cancer patients using dispensing data.

PubMed

Srasuebkul, Preeyaporn; Dobbins, Timothy A; Pearson, Sallie-Anne

2014-06-01

To assess the performance of a proxy for estrogen receptor (ER) status in breast cancer patients using dispensing data. We derived our proxy using 167 patients. ER+ patients had evidence of at least one dispensing record for hormone therapy during the lookback period, irrespective of diagnosis date and ER- had no dispensing records for hormone therapy during the period. We validated the proxy against our gold standard, ER status from pathology reports or medical records. We assessed the proxy's performance using three lookback periods: 4.5 years, 2 years, 1 year. More than half of our cohort (62%) were >50 years, 54% had stage III/IV breast cancer at recruitment, (46%) were diagnosed with breast cancer in 2009 and 23% were diagnosed before 2006. Sensitivity and specificity were high for the 4.5 year lookback period (93%, 95% CI: 86-96%; and 95%: 83-99%), respectively) and remained high for the 2-year lookback period (91%: 84-95%; and 95%: 83-99%). Sensitivity decreased (83%: 75.2-89%) but specificity remained high (95%: 83-99%) using the 1-year lookback period and the period is long enough to allow sufficient time for hormone therapy to be dispensed. Our proxy accurately infers ER status in studies of breast cancer treatment based on secondary health data. The proxy is most robust with a minimum lookback period of 2 years. © 2012 Wiley Publishing Asia Pty Ltd.

Cystine Stone Formers Have Impaired Health-Related Quality of Life Compared with Noncystine Stone Formers: A Case-Referent Study Piloting the Wisconsin Stone Quality of Life Questionnaire Among Patients with Cystine Stones.

PubMed

Streeper, Necole M; Wertheim, Margaret L; Nakada, Stephen Y; Penniston, Kristina L

2017-04-01

Cystinuria is a rare cause of urolithiasis. Affected patients have an earlier onset and more aggressive disease than patients with other stone etiologies. We assessed the health-related quality of life (HRQOL) of cystine stone-forming patients using the disease-specific Wisconsin Stone Quality of Life questionnaire (WISQOL). Cystine patients treated in our stone clinics (n = 12) completed the WISQOL; information about medical and stone histories was gathered. Patients were matched with noncystine stone formers (n = 12) for gender, age, and comorbidities. In addition, a second control group (n = 90), also from our institution and consisting of mixed calcium stone formers, was included. WISQOL responses were compared between groups. Cystine patients had significantly lower total WISQOL scores than noncystine patients. Compared with noncystine stone formers, cystine stone formers also had lower HRQOL scores for subscales (domains) related to social impact, emotional impact, disease impact, and vitality (p ≤ 0.04 for all). On specific items, cystine patients reported significantly more sleep problems (p = 0.02), more bother with nocturia (p = 0.03), and feeling tired or fatigued (p = 0.02). Among those with current stones, cystine patients scored lower than noncystine patients for total score and in two of four domains. Using a stone-specific questionnaire, patients with cystine stones have lower HRQOL compared with noncystine stone formers. Identifying and addressing specific areas of decrement in patients with cystine stones may improve disease management and patients' HRQOL.

Complete blood count risk score and its components, including RDW, are associated with mortality in the JUPITER trial.

PubMed

Horne, Benjamin D; Anderson, Jeffrey L; Muhlestein, Joseph B; Ridker, Paul M; Paynter, Nina P

2015-04-01

Previously, we showed that sex-specific complete blood count (CBC) risk scores strongly predicted risk of all-cause mortality in multiple sets of general medical patients. This study evaluated the CBC risk score in an independent, well-studied international primary risk population of lower-risk individuals initially free from cardiovascular (CV) disease. Observational secondary analysis of a randomized trial population. The previously derived and validated CBC score was evaluated for association with all-cause mortality among CV disease-free females (n = 6568) and males (n = 10,629) enrolled for up to 5 years in the Justification for the Use of Statins in Prevention: an Intervention Trial Evaluating Rosuvastatin (JUPITER) trial. Associations of the CBC score with CV mortality and with major CV disease were also tested. The CBC score predicted all-cause mortality, with univariable hazard ratio (HR) 4.83 (95% CI 3.70-6.31) for the third CBC score tertile vs. the first tertile, and HR 2.31 (CI 1.75-3.05) for the second tertile (p trend < 0.001). The CBC score retained significance after adjustment: HR 1.97 (CI 1.46-2.67) and 1.51 (CI 1.13-2.00) for tertiles 3 and 2 vs. 1, respectively (p trend < 0.001). The CBC score also predicted CV mortality (p trend = 0.025) and the primary JUPITER endpoint (p trend = 0.015). c-statistics for mortality were 0.729 among all, and 0.722 and 0.750 for females and males, respectively. The CBC risk score was strongly associated with all-cause mortality among JUPITER trial participants and had good discrimination. It also predicted CV-specific outcomes. This CBC score may be useful in identifying cardiac disease-free individuals at increased risk of mortality. © The European Society of Cardiology 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Testing parent dyad interchangeability in the parent proxy-report of PedsQL™ 4.0: a differential item functioning analysis.

PubMed

Doostfatemeh, Marziyeh; Ayatollahi, Seyyed Mohammad Taghi; Jafari, Peyman

2015-08-01

In child-parent agreement studies in the field of paediatric health-related quality of life (HRQoL), little attention has been paid to the effect of gender in parental proxy rating of children's HRQoL. This study aims to test the potential interchangeability of parent dyads in reporting children's HRQoL on both item and scale levels of the PedsQL™ 4.0 instrument, using the approach of differential item functioning (DIF). The PedsQL™ 4.0 Generic Core Scales were completed by 576 father-and-mother dyads. A polytomous item response theory model, graded response model, was used to detect DIF across fathers and mothers. Assessment at item level showed that fathers and mothers perceived the meaning of items of the PedsQL™ 4.0 consistently. Regarding the scale level, a moderate to high level of agreement was observed between mothers' and fathers' reports on all similar subscales. Although the significant mean score differences in total, physical and emotional functioning indicated that fathers gave higher scores to their children, the small effect size implied that this difference may not be practically meaningful. Our findings revealed that discrepancy in parent dyads in rating children's HRQoL is a "real" difference and not an artefact due to measurement non-invariance. Fathers were seen to have slightly different insights into their children, especially for emotional functioning, but overall the results were not all that different. This suggests that paternal proxy-reports can be included in studies along with maternal proxy-reports, and the two may be combined when looking at parent-child agreement. Parent-child agreement studies in Iran are not affected by parents' gender, and therefore, researchers may rely on the assumption of the interchangeability of fathers and mothers in these studies.

Is Walk Score associated with hospital admissions from chronic diseases? Evidence from a cross-sectional study in a high socioeconomic status Australian city-state

PubMed Central

Mazumdar, Soumya; Learnihan, Vincent; Cochrane, Thomas; Phung, Hai; O'Connor, Bridget; Davey, Rachel

2016-01-01

Objectives To explore patterns of non-communicable diseases (NCDs) in the Australian Capital Territory (ACT).To ascertain the effect of the neighbourhood built environmental features and especially walkability on health outcomes, specifically for hospital admissions from NCDs. Design A cross-sectional analysis of public hospital episode data (2007–2013). Setting Hospitalisations from the ACT, Australia at very small geographic areas. Participants Secondary data on 75 290 unique hospital episodes representing 39 851 patients who were admitted to ACT hospitals from 2007 to 2013. No restrictions on age, sex or ethnicity. Main exposure measures Geographic Information System derived or compatible measures of general practitioner access, neighbourhood socioeconomic status, alcohol access, exposure to traffic and Walk Score walkability. Main outcome measures Hospitalisations of circulatory diseases, specific endocrine, nutritional and metabolic diseases, respiratory diseases and specific cancers. Results Geographic clusters with significant high and low risks of NCDs were found that displayed an overall geographic pattern of high risk in the outlying suburbs of the territory. Significant relationships between neighbourhood walkability as measured by Walk Score and the likelihood of hospitalisation with a primary diagnosis of myocardial infarction (heart attack) were found. A possible relationship was also found with the likelihood of being hospitalised with 4 major lifestyle-related cancers. Conclusions Our research augments the growing literature underscoring the relationships between the built environment and health outcomes. In addition, it supports the importance of walkable neighbourhoods, as measured by Walk Score, for improved health. PMID:27932340

Predictive models for ocular chronic graft-versus-host disease diagnosis and disease activity in transplant clinical practice.

PubMed

Curtis, Lauren M; Datiles, Manuel B; Steinberg, Seth M; Mitchell, Sandra A; Bishop, Rachel J; Cowen, Edward W; Mays, Jacqueline; McCarty, John M; Kuzmina, Zoya; Pirsl, Filip; Fowler, Daniel H; Gress, Ronald E; Pavletic, Steven Z

2015-09-01

Ocular chronic graft-versus-host disease is one of the most bothersome common complications following allogeneic hematopoietic stem cell transplantation. The National Institutes of Health Chronic Graft-versus-Host Disease Consensus Project provided expert recommendations for diagnosis and organ severity scoring. However, ocular chronic graft-versus-host disease can be diagnosed only after examination by an ophthalmologist. There are no currently accepted definitions of ocular chronic graft-versus-host disease activity. The goal of this study was to identify predictive models of diagnosis and activity for use in clinical transplant practice. A total of 210 patients with moderate or severe chronic graft-versus-host disease were enrolled in a prospective, cross-sectional, observational study (clinicaltrials.gov identifier: 00092235). Experienced ophthalmologists determined presence of ocular chronic graft-versus-host disease, diagnosis and activity. Measures gathered by the transplant clinician included Schirmer's tear test and National Institutes of Health 0-3 Eye Score. Patient-reported outcome measures were the ocular subscale of the Lee Chronic Graft-versus-Host Disease Symptom Scale and Chief Eye Symptom Intensity Score. Altogether, 157 (75%) patients were diagnosed with ocular chronic graft-versus-host disease; 133 of 157 patients (85%) had active disease. In a multivariable model, the National Institutes of Health Eye Score (P<0.0001) and Schirmer's tear test (P<0.0001) were independent predictors of ocular chronic graft-versus-host disease (sensitivity 93.0%, specificity 92.2%). The Lee ocular subscale was the strongest predictor of active ocular chronic graft-versus-host disease (P<0.0001) (sensitivity 68.5%, specificity 82.6%). Ophthalmology specialist measures that were most strongly predictive of diagnosis in a multivariate model were Oxford grand total staining (P<0.0001) and meibomian score (P=0.027). These results support the use of selected transplant clinician- and patient-reported outcome measures for ocular chronic graft-versus-host disease screening when providing care to allogeneic hematopoietic stem cell transplantation survivors with moderate to severe chronic graft-versus-host disease. Prospective studies are needed to determine if the Lee ocular subscale demonstrates adequate responsiveness as a disease activity outcome measure. Copyright© Ferrata Storti Foundation.

Predictive models for ocular chronic graft-versus-host disease diagnosis and disease activity in transplant clinical practice

PubMed Central

Curtis, Lauren M.; Datiles, Manuel B.; Steinberg, Seth M.; Mitchell, Sandra A.; Bishop, Rachel J.; Cowen, Edward W.; Mays, Jacqueline; McCarty, John M.; Kuzmina, Zoya; Pirsl, Filip; Fowler, Daniel H.; Gress, Ronald E.; Pavletic, Steven Z.

2015-01-01

Ocular chronic graft-versus-host disease is one of the most bothersome common complications following allogeneic hematopoietic stem cell transplantation. The National Institutes of Health Chronic Graft-versus-Host Disease Consensus Project provided expert recommendations for diagnosis and organ severity scoring. However, ocular chronic graft-versus-host disease can be diagnosed only after examination by an ophthalmologist. There are no currently accepted definitions of ocular chronic graft-versus-host disease activity. The goal of this study was to identify predictive models of diagnosis and activity for use in clinical transplant practice. A total of 210 patients with moderate or severe chronic graft-versus-host disease were enrolled in a prospective, cross-sectional, observational study (clinicaltrials.gov identifier: 00092235). Experienced ophthalmologists determined presence of ocular chronic graft-versus-host disease, diagnosis and activity. Measures gathered by the transplant clinician included Schirmer’s tear test and National Institutes of Health 0–3 Eye Score. Patient-reported outcome measures were the ocular subscale of the Lee Chronic Graft-versus-Host Disease Symptom Scale and Chief Eye Symptom Intensity Score. Altogether, 157 (75%) patients were diagnosed with ocular chronic graft-versus-host disease; 133 of 157 patients (85%) had active disease. In a multivariable model, the National Institutes of Health Eye Score (P<0.0001) and Schirmer’s tear test (P<0.0001) were independent predictors of ocular chronic graft-versus-host disease (sensitivity 93.0%, specificity 92.2%). The Lee ocular subscale was the strongest predictor of active ocular chronic graft-versus-host disease (P<0.0001) (sensitivity 68.5%, specificity 82.6%). Ophthalmology specialist measures that were most strongly predictive of diagnosis in a multivariate model were Oxford grand total staining (P<0.0001) and meibomian score (P=0.027). These results support the use of selected transplant clinician- and patient-reported outcome measures for ocular chronic graft-versus-host disease screening when providing care to allogeneic hematopoietic stem cell transplantation survivors with moderate to severe chronic graft-versus-host disease. Prospective studies are needed to determine if the Lee ocular subscale demonstrates adequate responsiveness as a disease activity outcome measure. PMID:26088932

A comparison between two healthy diet scores, the modified Mediterranean diet score and the Healthy Nordic Food Index, in relation to all-cause and cause-specific mortality.

PubMed

Warensjö Lemming, Eva; Byberg, Liisa; Wolk, Alicja; Michaëlsson, Karl

2018-04-01

High adherence to healthy diets has the potential to prevent disease and prolong life span, and healthy dietary pattern scores have each been associated with disease and mortality. We studied two commonly promoted healthy diet scores (modified Mediterranean diet score (mMED) and the Healthy Nordic Food Index (HNFI)) and the combined effect of the two scores in association with all-cause and cause-specific mortality (cancer, CVD and ischaemic heart disease). The study included 38 428 women (median age of 61 years) from the Swedish Mammography Cohort. Diet and covariate data were collected in a questionnaire. mMED and HNFI were generated and categorised into low-, medium- and high-adherence groups, and in nine combinations of these. Multivariable-adjusted hazard ratios (HR) of register-ascertained mortality and 95 % CI were calculated in Cox proportional hazards regression analysis. During follow-up (median: 17 years), 10 478 women died. In the high-adherence categories compared with low-adherence categories, the HR for all-cause mortality was 0·76 (95 % CI 0·70, 0·81) for mMED and 0·89 (95 % CI 0·83, 0·96) for HNFI. Higher adherence to mMED was associated with lower mortality in each stratum of HNFI in the combined analysis. In general, mMED, compared with HNFI, was more strongly associated with a lower cause-specific mortality. In Swedish women, both mMED and HNFI were inversely associated with all-cause and cardiovascular mortality. The combined analysis, however, indicated an advantage to be adherent to the mMED. The present version of HNFI did not associate with mortality independent of mMED score.

Caregiver-proxy reliability of the Igbo-culture adapted Maleka Stroke Community Reintegration Measure: a validation study.

PubMed

Okoye, Emmanuel Chiebuka; Awhen, Peter Agba; Akosile, Christopher Olusanjo; Maruf, Fatai Adesina; Iheukwumere, Ngozi; Egwuonwu, Afamefuna Victor

2017-09-01

This study was designed to determine the caregiver-proxy reliability of the Igbo-culture adapted urban version of the Maleka Stroke Community Reintegration Measure (I-MSCRIM). This was a validation study involving 74 consenting stroke survivors and their 74 primary informal caregivers consecutively recruited from selected tertiary hospitals in South-East Nigeria (Igboland). The I-MSCRIM was researcher-administered to the participants. Obtained data was analyzed using frequency counts, percentages, range, mean, standard deviation, Spearman rank order correlation, Mann-Whitney U test, Kruskal-Wallis test and Intra-class Correlation Coefficient. Alpha level was set at 0.05. The mean ages of the stroke survivors (55.4% males) and their primary informal caregivers (41.9% males) were 50.14 ± 12.24 and 31.93 ± 10.9 years respectively. There was no significant difference in the community reintegration (CR) scores as rated by stroke survivors and their primary informal caregivers (p > 0.05). The correlations between stroke survivors' and primary informal caregivers' rated CR scores were all adequate and acceptable (ICC = 0.602-0.917). The discrepancy in the total CR scores between the two ratings was significantly influenced by primary informal caregivers' educational attainment (k = 13.15; p < 0.01). The I-MSCRIM has acceptable caregiver-proxy reliability among Igbo stroke survivors in South-East Nigeria. This suggests that primary informal caregivers of stroke survivors can reliably estimate the CR of their care recipients when I-MSCRIM is administered to them. This will be useful when a stroke survivor cannot respond to I-MSCRIM.

Comparison of simplified score with the revised original score for the diagnosis of autoimmune hepatitis: a new or a complementary diagnostic score?

PubMed

Gatselis, Nikolaos K; Zachou, Kalliopi; Papamichalis, Panagiotis; Koukoulis, George K; Gabeta, Stella; Dalekos, George N; Rigopoulou, Eirini I

2010-11-01

The International Autoimmune Hepatitis Group developed a simplified score for autoimmune hepatitis. We assessed this "new scoring system" and compared it with the International Autoimmune Hepatitis Group original revised score. 502 patients were evaluated namely, 428 had liver diseases of various etiology [hepatitis B (n=109), hepatitis C (n=100), hepatitis D (n=4), alcoholic liver disease (n=28), non-alcoholic fatty liver disease (n=55), autoimmune cholestatic diseases (n=77), liver disorders of undefined origin (n=32) and miscellaneous hepatic disorders (n=23)], 13 had autoimmune hepatitis/overlap syndromes, 18 had autoimmune hepatitis/concurrent with other liver diseases and 43 had autoimmune hepatitis. The specificity of the simplified score was similar to that of the revised score (97% vs. 97.9%). The sensitivity in unmasking autoimmune hepatitis in autoimmune hepatitis/overlap syndromes was also similar in both systems (53.8% and 61.5%). However, the sensitivity for autoimmune hepatitis diagnosis in autoimmune hepatitis patients with concurrent liver disorders was lower by the new score (p=0.001). Liver biopsy proved to be the only independent factor for unmasking autoimmune hepatitis component among patients (p=0.003). The simplified score is a reliable and simple tool for excluding autoimmune hepatitis. However, both systems cannot unmask autoimmune hepatitis component efficiently in autoimmune hepatitis patients with concurrent autoimmune or non-autoimmune liver diseases. This study also strongly reiterates the importance of liver biopsy in the work-up of patients. Copyright © 2010 Editrice Gastroenterologica Italiana S.r.l. Published by Elsevier Ltd. All rights reserved.

Inheritance-mode specific pathogenicity prioritization (ISPP) for human protein coding genes.

PubMed

Hsu, Jacob Shujui; Kwan, Johnny S H; Pan, Zhicheng; Garcia-Barcelo, Maria-Mercè; Sham, Pak Chung; Li, Miaoxin

2016-10-15

Exome sequencing studies have facilitated the detection of causal genetic variants in yet-unsolved Mendelian diseases. However, the identification of disease causal genes among a list of candidates in an exome sequencing study is still not fully settled, and it is often difficult to prioritize candidate genes for follow-up studies. The inheritance mode provides crucial information for understanding Mendelian diseases, but none of the existing gene prioritization tools fully utilize this information. We examined the characteristics of Mendelian disease genes under different inheritance modes. The results suggest that Mendelian disease genes with autosomal dominant (AD) inheritance mode are more haploinsufficiency and de novo mutation sensitive, whereas those autosomal recessive (AR) genes have significantly more non-synonymous variants and regulatory transcript isoforms. In addition, the X-linked (XL) Mendelian disease genes have fewer non-synonymous and synonymous variants. As a result, we derived a new scoring system for prioritizing candidate genes for Mendelian diseases according to the inheritance mode. Our scoring system assigned to each annotated protein-coding gene (N = 18 859) three pathogenic scores according to the inheritance mode (AD, AR and XL). This inheritance mode-specific framework achieved higher accuracy (area under curve  = 0.84) in XL mode. The inheritance-mode specific pathogenicity prioritization (ISPP) outperformed other well-known methods including Haploinsufficiency, Recessive, Network centrality, Genic Intolerance, Gene Damage Index and Gene Constraint scores. This systematic study suggests that genes manifesting disease inheritance modes tend to have unique characteristics. ISPP is included in KGGSeq v1.0 (http://grass.cgs.hku.hk/limx/kggseq/), and source code is available from (https://github.com/jacobhsu35/ISPP.git). mxli@hku.hkSupplementary information: Supplementary data are available at Bioinformatics online. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

[Münchhausen syndrome by proxy].

PubMed

Le Heuzey, M-F; Mouren, M-C

2008-01-01

Münchhausen syndrome by proxy is a factitious disorder, a disease produced or simulated by a parent, the mother in most cases. Clinical presentation is miscellaneous (factitious bleeding, epilepsy, apnea are frequent) and unusual. Physicians participate in the abuse by their therapeutic and diagnostical measures. It is very important to think about this diagnostic in any ambiguous situation in order to evaluate and protect the child.

Extension of the lod score: the mod score.

PubMed

Clerget-Darpoux, F

2001-01-01

In 1955 Morton proposed the lod score method both for testing linkage between loci and for estimating the recombination fraction between them. If a disease is controlled by a gene at one of these loci, the lod score computation requires the prior specification of an underlying model that assigns the probabilities of genotypes from the observed phenotypes. To address the case of linkage studies for diseases with unknown mode of inheritance, we suggested (Clerget-Darpoux et al., 1986) extending the lod score function to a so-called mod score function. In this function, the variables are both the recombination fraction and the disease model parameters. Maximizing the mod score function over all these parameters amounts to maximizing the probability of marker data conditional on the disease status. Under the absence of linkage, the mod score conforms to a chi-square distribution, with extra degrees of freedom in comparison to the lod score function (MacLean et al., 1993). The mod score is asymptotically maximum for the true disease model (Clerget-Darpoux and Bonaïti-Pellié, 1992; Hodge and Elston, 1994). Consequently, the power to detect linkage through mod score will be highest when the space of models where the maximization is performed includes the true model. On the other hand, one must avoid overparametrization of the model space. For example, when the approach is applied to affected sibpairs, only two constrained disease model parameters should be used (Knapp et al., 1994) for the mod score maximization. It is also important to emphasize the existence of a strong correlation between the disease gene location and the disease model. Consequently, there is poor resolution of the location of the susceptibility locus when the disease model at this locus is unknown. Of course, this is true regardless of the statistics used. The mod score may also be applied in a candidate gene strategy to model the potential effect of this gene in the disease. Since, however, it ignores the information provided both by disease segregation and by linkage disequilibrium between the marker alleles and the functional disease alleles, its power of discrimination between genetic models is weak. The MASC method (Clerget-Darpoux et al., 1988) has been designed to address more efficiently the objectives of a candidate gene approach.

Failure of Syndrome-Based Diarrhea Management Guidelines to Detect Shigella Infections in Kenyan Children

PubMed Central

Pavlinac, P. B.; Denno, D. M.; John-Stewart, G. C.; Onchiri, F. M.; Naulikha, J. M.; Odundo, E. A.; Hulseberg, C. E.; Singa, B. O.; Manhart, L. E.; Walson, J. L.

2016-01-01

Background Shigella is a leading cause of childhood diarrhea mortality in sub-Saharan Africa. Current World Health Organization guidelines recommend antibiotics for children in non cholera-endemic areas only in the presence of dysentery, a proxy for suspected Shigella infection. Methods To assess the sensitivity and specificity of the syndromic diagnosis of Shigella-associated diarrhea, we enrolled children aged 6 months to 5 years presenting to 1 of 3 Western Kenya hospitals between November 2011 and July 2014 with acute diarrhea. Stool samples were tested using standard methods for bacterial culture and multiplex polymerase chain reaction for pathogenic Escherichia coli. Stepwise multivariable logit models identified factors to increase the sensitivity of syndromic diagnosis. Results Among 1360 enrolled children, median age was 21 months (interquartile range, 11–37), 3.4% were infected with human immunodeficiency virus, and 16.5% were stunted (height-for-age z-score less than −2). Shigella was identified in 63 children (4.6%), with the most common species being Shigella sonnei (53.8%) and Shigella flexneri (40.4%). Dysentery correctly classified 7 of 63 Shigella cases (sensitivity, 11.1%). Seventy-eight of 1297 children without Shigella had dysentery (specificity, 94.0%). The combination of fecal mucous, age over 23 months, and absence of excessive vomiting identified more children with Shigella-infection (sensitivity, 39.7%) but also indicated antibiotics in more children without microbiologically confirmed Shigella (specificity, 82.7%). Conclusions Reliance on dysentery as a proxy for Shigella results in the majority of Shigella-infected children not being identified for antibiotics. Field-ready rapid diagnostics or updated evidence-based algorithms are urgently needed to identify children with diarrhea most likely to benefit from antibiotic therapy. PMID:26407270

Impaired emotional autobiographical memory associated with right amygdalar-hippocampal atrophy in Alzheimer's disease patients.

PubMed

Philippi, Nathalie; Botzung, Anne; Noblet, Vincent; Rousseau, François; Després, Olivier; Cretin, Benjamin; Kremer, Stéphane; Blanc, Frédéric; Manning, Liliann

2015-01-01

We studied the influence of emotions on autobiographical memory (AbM) in patients with Alzheimer's disease (AD), characteristically triggering atrophy in the hippocampus and the amygdala, two crucial structures sustaining memory and emotional processing. Our first aim was to analyze the influence of emotion on AbM in AD patients, on both the proportion and the specificity of emotional memories. Additionally, we sought to determine the relationship of emotional AbM to amygdalar-hippocampal volumes. Eighteen prodromal to mild AD patients and 18 age-matched healthy controls were included. We obtained 30 autobiographical memories per participant using the modified Crovitz test (MCT). Analyses were performed on global scores, rates and specificity scores of the emotional vs. neutral categories of memories. Amygdalar-hippocampal volumes were extracted from 3D T1-weighted MRI scans and tested for correlations with behavioral data. Overall, AD patients displayed a deficit in emotional AbMs as they elicited less emotional memories than the controls, however, the specificity of those memories was preserved. The deficit likely implied retrieval or storage as it was extended in time and without reminiscence bump effect. Global scores and rates of emotional memories, but not the specificity scores, were correlated to right amygdalar and hippocampal volumes, indicating that atrophy in these structures has a central role in the deficit observed. Conversely, emotional memories were more specific than neutral memories in both groups, reflecting an enhancement effect of emotion that could be supported by other brain regions that are spared during the early stages of the disease.

Risk of thromboembolic complications in adult congenital heart disease: A literature review.

PubMed

Karsenty, Clement; Zhao, Alexandre; Marijon, Eloi; Ladouceur, Magalie

2018-05-30

Adult congenital heart disease (ACHD) is a constantly expanding population with challenging issues. Initial medical and surgical treatments are seldom curative, and the majority of patients still experience late sequelae and complications, especially thromboembolic events. These common and potentially life-threating adverse events are probably dramatically underdiagnosed. Better identification and understanding of thromboembolic risk factors are essential to prevent long-term related morbidities. In addition to specific situations associated with a high risk of thromboembolic events (Fontan circulation, cyanotic congenital heart disease), atrial arrhythmia has been recognized as an important risk factor for thromboembolic events in ACHD. Unlike in patients without ACHD, thromboembolic risk stratification scores, such as the CHA 2 DS 2 -VASc score, may not be applicable in ACHD. Overall, after a review of the scientific data published so far, it is clear that the complexity of the underlying congenital heart disease represents a major risk factor for thromboembolic events. As a consequence, prophylactic anticoagulation is indicated in patients with complex congenital heart disease and atrial arrhythmia, regardless of the other risk factors, as opposed to simple heart defects. The landscape of ACHD is an ongoing evolving process, and specific thromboembolic risk scores are needed, especially in the setting of simple heart defects; these should be coupled with specific trials or long-term follow-up of multicentre cohorts. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

Soluble CD163 is increased in patients with acute pancreatitis independent of disease severity.

PubMed

Karrasch, Thomas; Brünnler, Tanja; Hamer, Okka W; Schmid, Karin; Voelk, Markus; Herfarth, Hans; Buechler, Christa

2015-10-01

Macrophages are crucially involved in the pathophysiology of acute pancreatitis. Soluble CD163 (sCD163) is specifically released from macrophages and systemic levels are increased in inflammatory diseases. Here, sCD163 was measured in serum of 50 patients with acute pancreatitis to find out possible associations with disease activity. Admission levels of systemic sCD163 were nearly three-fold higher in patients with acute pancreatitis compared to controls. In patients sCD163 did not correlate with C-reactive protein and leukocyte count as established markers of inflammation. Levels were not associated with disease severity assessed by the Schroeder score, Balthazar score, Acute Physiology, Age, and Chronic Health Evaluation (Apache) II score and peripancreatic necrosis score. Soluble CD163 was not related to complications of acute pancreatitis. These data show that serum sCD163 is increased in acute pancreatitis indicating activation of macrophages but is not associated with disease severity and outcome. Copyright © 2015 Elsevier Inc. All rights reserved.

Outcome results of self-efficacy in children with sickle disease pain who were trained to use guided imagery.

PubMed

Dobson, Cassandra

2015-11-01

The aim of this study was to describe self-efficacy as a theoretical component of behavior change in various therapeutic treatments such as the management of SCD pain. The participants were prepared to self-initiate the GI for 5 to 10 minutes three times each day regardless of pain and also during each pain episode. As part of the GI training a tape or CD with guided imagery messages was provided. Participants were monitored for 4 weeks pre and 4 weeks post intervention (GI training). Children kept a daily record of pain episodes. During this time, children continued to record as before in their personal study diary: pain episodes (intensity and treatment), school attendance, and also the frequency of GI use. At the conclusion of this 4-week period, usual pain patterns (PAT), visual imagery ability (KIAQ), and disease specific self-efficacy scale were measured again. The Sickle Cell Self-Efficacy Scale (SCSES) is a new nine-item scale measuring disease-specific perceptions of self-efficacy. The instrument's developers established internal consistency by Cronbach's alpha of 0.89. H1: Children with SCD who are trained in guided imagery will have greater disease-specific self-efficacy following the training than they had prior to learning guided imagery; the hypothesis was tested and supported using t-tests of mean interval-level scores on the SCSES. Eighteen children had positive gained scores and sixteen children raised their scores more than one standard deviation above the mean score for this sample distribution. Greater self-efficacy scores are associated with better physical and psychological functioning. Copyright © 2015 Elsevier Inc. All rights reserved.

Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales and the Cardiac Module.

PubMed

Berkes, Andrea; Pataki, István; Kiss, Mariann; Kemény, Csilla; Kardos, László; Varni, James W; Mogyorósy, Gábor

2010-01-28

The aim of the study was to investigate the psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scales and Cardiac Module. The PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Cardiac Module was administered to 254 caregivers of children (aged 2-18 years) and to 195 children (aged 5-18 years) at a pediatric cardiology outpatient unit. A postal survey on a demographically group-matched sample of the general population with 525 caregivers of children (aged 2-18 years) and 373 children (aged 5-18 years) was conducted with the PedsQL 4.0 Generic Core Scale. Responses were described, compared over subgroups of subjects, and were used to assess practical utility, distributional coverage, construct validity, internal consistency, and inter-reporter agreement of the instrument. The moderate scale-level mean percentage of missing item responses (range 1.8-2.3%) supported the feasibility of the Generic Core Scales for general Hungarian children. Minimal to moderate ceiling effects and no floor effects were found on the Generic Core Scales. We observed stronger ceiling than floor effects in the Cardiac Module. Most of the scales showed satisfactory reliability with Cronbach's alpha estimates exceeding 0.70. Generally, moderate to good agreement was found between self- and parent proxy-reports in the patient and in the comparison group (intraclass correlation coefficient range 0.52-0.77), but remarkably low agreement in the perceived physical appearance subscale in the age group 5-7 years (0.18) and for the treatment II scale (problems on taking heart medicine) scale of the Cardiac Module in children aged 8-12 years (0.39). Assessing the construct validity of the questionnaires, statistically significant difference was found between the patient group and the comparison group only in the Physical Functioning Scale scores (p = 0.003) of the child self-report component, and in Physical (p = 0.022), Emotional, (p = 0.017), Psychosocial Summary (p = 0.019) scores and in the total HRQoL (health-related quality of life) scale score (p = 0.034) for parent proxy-report. The findings generally support the feasibility, reliability and validity of the Hungarian translation of the PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Cardiac Module in Hungarian children with heart disease.

Disease-specific health-related quality of life in patients with esophageal achalasia before and after therapy.

PubMed

Garrigues, V; Ortiz, V; Casanova, C; Bujanda, L; Moreno-Osset, E; Rodríguez-Téllez, M; Montserrat, A; Brotons, A; Fort, E; Ponce, J

2010-07-01

To evaluate disease-specific health-related quality of life (HRQoL) in patients with symptomatic esophageal achalasia before and after therapy. Symptoms and disease-specific HRQoL were evaluated before and 3 months after therapy. Therapy selection, either dilatation or myotomy, depended exclusively on the opinion of the physician on charge of the patient. Symptom severity was graded from 0 to 3, using a scoring system. A disease-specific questionnaire for achalasia developed and validated in Spanish language with 18 items and four subscales (AE-18) was used to evaluate HRQoL. Changes after therapy in HRQoL and its association with clinical improvement were analyzed. Sixty-five patients were prospectively included in eight hospitals in Spain. Of them, 47 were treated with dilatation, and 18 with laparoscopic Heller myotomy. After therapy, AE-18 global and subscales scores improved significantly. Changes in HRQoL were associated with improvement in symptoms. An important improvement in symptoms (>or=50%) was needed to obtain a minimal clinically important improvement (>or=20%) in HRQoL. Disease-specific HRQoL improves in patients with symptomatic achalasia after therapy with dilatation or myotomy. The degree of improvement of HRQoL depends on the degree of improvement of esophageal symptoms.

The prevalence and predictors of disordered eating in women with coeliac disease.

PubMed

Satherley, Rose-Marie; Howard, Ruth; Higgs, Suzanne

2016-12-01

The need for dietary management in coeliac disease may lead to the development of disordered eating. This study examined the prevalence of disordered eating and factors predicting disordered eating in women with coeliac disease, compared with other dietary-controlled conditions. A cross-sectional, online survey assessing psychological well-being, disordered eating behaviours (Eating Attitudes Test 26 (EAT-26); Binge Eating Scale (BES)) was distributed using online forums, to those with coeliac disease (N = 157), inflammatory bowel disease (N = 116), type two diabetes (N = 88) and healthy controls (N = 142). Hierarchical regressions were conducted to explore and compare the predictors of EAT-26 and BES scores across all groups. Within the coeliac disease group, a cluster analysis was conducted to examine types of disordered eating. Higher EAT-26 scores were found in those with coeliac disease and inflammatory bowel disease compared with healthy controls and type two diabetes; participants with a chronic health condition had higher BES than healthy control participants. The factors associated with EAT-26 scores differed across the dietary-controlled health conditions, with dietary management being important for those with coeliac disease. Psychological distress was associated with binge-eating behaviour across all groups. Cluster analyses found two types of disordered eating in coeliac disease; a binge eating type and a restrictive type. Disordered eating attitudes and behaviours are more prevalent in participants with chronic health conditions relative to healthy controls. The presence of binge eating behaviours in coeliac disease may be related to non-coeliac disease specific factors such as the distress associated with dietary-controlled illness. EAT-26 scores in coeliac disease are associated with disease specific factors, unique to following the gluten-free diet. These factors are important for identifying and supporting those with coeliac disease and disordered eating. Copyright © 2016 Elsevier Ltd. All rights reserved.

Neonatal extracorporeal membrane oxygenation: impaired health at 5 years of age.

PubMed

Madderom, Marlous J; Gischler, Saskia J; Duivenvoorden, Hugo; Tibboel, Dick; Ijsselstijn, Hanneke

2013-02-01

Children treated with neonatal extracorporeal membrane oxygenation may show physical and mental morbidity at a later age. We compared the health-related quality of life of these children with normative data. Prospective longitudinal follow-up study. Outpatient clinic of a level III university hospital. Ninety-five 5-yr-old children who had received neonatal extracorporeal membrane oxygenation support between January 1999 and December 2005. None. The pediatric quality of life inventory was administered at 5 yrs of age. The mothers (n = 74) as proxy-reporters assigned significantly lower health-related quality of life scores for their children than did the parents in the healthy reference group for the total functioning scale of the pediatric quality of life inventory (mean difference: 8.1; p < 0.001). Mothers' scores for 31 children (42%) were indicative of impaired health-related quality of life (≥-1 SD below the reference norm). The children (n = 78) themselves scored significantly lower than did their healthy peers on total functioning (mean difference: 11.0; p < 0.001). Thirty-two children (41%) indicated an impaired health-related quality of life themselves. For the mother proxy- reports, the duration of extracorporeal membrane oxygenation support (R = 0.009; p = 0.010) and the presence of chronic lung disease (R = 0.133; p = 0.002) were negatively related to total functioning. Children with a disabled health status for neuromotor functioning, maximum exercise capacity, behavior, and cognitive functioning at 5 yrs of age had a higher odds ratio of also having a lower health-related quality of life. Health status had no influence on reported emotional functioning. Overall, children treated with extracorporeal membrane oxygenation in the neonatal period reported low health-related quality of life at 5 yrs of age. Because only emotional health-related quality of life was not associated with health status, the pediatric quality of life inventory might be a measure of health status rather than of health-related quality of life. In contrast with conclusions from others, we found that 5-yr-old children might be too young to rate their own health-related quality of life.

Paediatric nutrition risk scores in clinical practice: children with inflammatory bowel disease.

PubMed

Wiskin, A E; Owens, D R; Cornelius, V R; Wootton, S A; Beattie, R M

2012-08-01

There has been increasing interest in the use of nutrition risk assessment tools in paediatrics to identify those who need nutrition support. Four non-disease specific screening tools have been developed, although there is a paucity of data on their application in clinical practice and the degree of inter-tool agreement. The concurrent validity of four nutrition screening tools [Screening Tool for the Assessment of Malnutrition in Paediatrics (STAMP), Screening Tool for Risk On Nutritional status and Growth (STRONGkids), Paediatric Yorkhill Malnutrition Score (PYMS) and Simple Paediatric Nutrition Risk Score (PNRS)] was examined in 46 children with inflammatory bowel disease. Degree of malnutrition was determined by anthropometry alone using World Health Organization International Classification of Diseases (ICD-10) criteria. There was good agreement between STAMP, STRONGkids and PNRS (kappa > 0.6) but there was only modest agreement between PYMS and the other scores (kappa = 0.3). No children scored low risk with STAMP, STRONGkids or PNRS; however, 23 children scored low risk with PYMS. There was no agreement between the risk tools and the degree of malnutrition based on anthropometric data (kappa < 0.1). Three children had anthropometry consistent with malnutrition and these were all scored high risk. Four children had body mass index SD scores < -2, one of which was scored at low nutrition risk. The relevance of nutrition screening tools for children with chronic disease is unclear. In addition, there is the potential to under recognise nutritional impairment (and therefore nutritional risk) in children with inflammatory bowel disease. © 2012 The Authors. Journal of Human Nutrition and Dietetics © 2012 The British Dietetic Association Ltd.

Do the EULAR Sjögren's syndrome outcome measures correlate with health status in primary Sjögren's syndrome?

PubMed

Lendrem, Dennis; Mitchell, Sheryl; McMeekin, Peter; Gompels, Luke; Hackett, Katie; Bowman, Simon; Price, Elizabeth; Pease, Colin T; Emery, Paul; Andrews, Jacqueline; Lanyon, Peter; Hunter, John; Gupta, Monica; Bombardieri, Michele; Sutcliffe, Nurhan; Pitzalis, Costantino; McLaren, John; Cooper, Annie; Regan, Marian; Giles, Ian; Isenberg, David; Saravanan, Vadivelu; Coady, David; Dasgupta, Bhaskar; McHugh, Neil; Young-Min, Steven; Moots, Robert; Gendi, Nagui; Akil, Mohammed; Griffiths, Bridget; Ng, Wan-Fai

2015-04-01

This study sets out to investigate the relationship between health status [EuroQol five-dimensions questionnaire (EQ-5D)] in primary SS and three of the European League Against Rheumatism (EULAR) SS outcome measures-the disease activity index (ESSDAI), the patient reported index (ESSPRI) and the sicca score. In particular, the goal was to establish whether there is a relationship between the EULAR outcome measures and quality of life. Health status was evaluated using a standardized measure developed by the EuroQol Group-the EQ5D. This permits calculation of two measures of health status: time trade-off (TTO) values and the EQ-5D visual analogue scale (VAS) scores. We used Spearman's rank correlation analysis to investigate the strength of association between health status and three EULAR measures of physician- and patient-reported disease activity in 639 patients from the UK primary SS registry (UKPSSR) cohort. This study demonstrates that the EULAR SS disease-specific outcome measures are significantly correlated with health outcome values (P < 0.001). Higher scores on the ESSDAI, EULAR sicca score and ESSPRI are associated with poorer health states-i.e. lower TTO values and lower VAS scores. While all three are significantly correlated with TTO values and EQ-5D VAS scores, the effect is strongest for the ESSPRI. This study provides further evidence supporting the use of ESSDAI, EULAR sicca score and ESSPRI measures in the clinic. We also discuss the need for disease-specific measures of health status and their comparison with standardized health outcome measures. © The Author 2014. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Education and occupation as proxies for reserve in aMCI converters and AD: FDG-PET evidence.

PubMed

Garibotto, V; Borroni, B; Kalbe, E; Herholz, K; Salmon, E; Holtoff, V; Sorbi, S; Cappa, S F; Padovani, A; Fazio, F; Perani, D

2008-10-21

Previous reports have shown that higher education is associated with more severe brain pathology in patients with Alzheimer disease (AD), suggesting that these individuals have a functional reserve provided by education, which masks the clinical expression of a higher degree of neurodegeneration. It is unknown if a similar reserve mechanism exists in patients with amnestic mild cognitive impairment (aMCI). The aim of this study was to assess the impact of education and occupation on brain glucose metabolism (rCMRglc) measured with FDG-PET in aMCI and in a very large sample of subjects with probable AD (pAD). A total of 242 patients with pAD, 72 with aMCI, and 144 healthy controls participated in the study. At follow-up, 21 subjects with aMCI progressed to AD. A regression analysis was conducted (SPM2), with education and occupation as independent variables, and rCMRglc as dependent variable, adjusting for demographic data, global cognitive status, and neuropsychological scores. The analysis showed a significant association between higher education/occupation and lower rCMRglc in posterior temporoparietal cortex and precuneus in pAD and aMCI converters, and no correlation in aMCI nonconverters and healthy controls. This means that, when submitted to FDG-PET for diagnostic evaluation, pAD and aMCI converters with higher education/occupation had, for comparable cognitive impairment, a more severe rCMRglc reduction than the ones with lower education/occupation. This study suggests that education and occupation may be proxies for brain functional reserve, reducing the severity and delaying the clinical expression of Alzheimer disease (AD) pathology. The results in aMCI converters suggest that functional reserve is already at play in the predementia phase of AD.

Further validation of the Internet-based Dementia Risk Assessment.

PubMed

Brandt, Jason; Blehar, Justin; Anderson, Allan; Gross, Alden L

2014-01-01

Most approaches to the detection of presymptomatic or prodromal Alzheimer's disease require the costly collection and analysis of biological samples or neuroimaging measurements. The Dementia Risk Assessment (DRA) was developed to facilitate this detection by collecting self-report and proxy-report of dementia risk variables and episodic memory performance on a free Internet website. We now report two validation studies. In Study 1, 130 community-residing older adults seeking memory screening at senior health fairs were tested using the Mini-Cog, and were then observed while taking the DRA. They were compared to a demographically-matched subsample from our anonymous Internet sample. Participants seeking memory screening had more dementia risk factors and obtained lower scores on the DRA's recognition memory test (RMT) than their Internet controls. In addition, those who failed the Mini-Cog obtained much lower scores on the RMT than those who passed the Mini-Cog. In Study 2, 160 older adults seeking evaluation of cognitive difficulties took the DRA prior to diagnostic evaluations at outpatient dementia clinics. Patients who ultimately received the diagnosis of a dementia syndrome scored significantly lower on the RMT than those diagnosed with other conditions or deemed normal. Lower education, family history of dementia, presence of hypercholesterolemia and diabetes, and memory test score distinguished the dementia and no-dementia groups with around 82% accuracy. In addition, score on the RMT correlated highly with scores on other instruments widely used to detect cognitive decline. These findings support the concurrent validity of the DRA for detecting prevalent cognitive impairment. Prospective studies of cognitively normal persons who subsequently develop dementia will be necessary to establish its predictive validity.

Insufficient access to harm reduction measures in prisons in 5 countries (PRIDE Europe): a shared European public health concern.

PubMed

Michel, Laurent; Lions, Caroline; Van Malderen, Sara; Schiltz, Julie; Vanderplasschen, Wouter; Holm, Karina; Kolind, Torsten; Nava, Felice; Weltzien, Nadja; Moser, Andrea; Jauffret-Roustide, Marie; Maguet, Olivier; Carrieri, Patrizia M; Brentari, Cinzia; Stöver, Heino

2015-10-27

Prisoners constitute a high-risk population, particularly for infectious diseases. The aim of this study was to estimate the level of infectious risk in the prisons of five different European countries by measuring to what extent the prison system adheres to WHO/UNODC recommendations. Following the methodology used in a previous French survey, a postal/electronic questionnaire was sent to all prisons in Austria, Belgium, Denmark and Italy to collect data on the availability of several recommended HIV-HCV prevention interventions and HBV vaccination for prisoners. A score was built to compare adherence to WHO/UNODC recommendations (considered a proxy of environmental infectious risk) in those 4 countries. It ranged from 0 (no adherence) to 12 (full adherence). A second score (0 to 9) was built to include data from a previous French survey, thereby creating a 5-country comparison. A majority of prisons answered in Austria (100 %), France (66 %) and Denmark (58 %), half in Belgium (50 %) and few in Italy (17 %), representing 100, 74, 89, 47 and 23 % coverage of the prison populations, respectively. Availability of prevention measures was low, with median adherence scores ranging from 3.5 to 4.5 at the national level. These results were confirmed when using the second score which included France in the inter-country comparison. Overall, the adherence score was inversely associated with prison overpopulation rates (p = 0.08). Using a score of adherence to WHO/UNODC recommendations, the estimated environmental infectious risk remains extremely high in the prisons of the 5 European countries assessed. Public health strategies should be adjusted to comply with the principle of equivalence of care and prevention with the general community.

Development of the Sensory Hypersensitivity Scale (SHS): a self-report tool for assessing sensitivity to sensory stimuli

PubMed Central

Dixon, Eric A.; Benham, Grant; Sturgeon, John A.; Mackey, Sean; Johnson, Kevin A.; Younger, Jarred

2016-01-01

Sensory hypersensitivity is one manifestation of the central sensitization that may underlie conditions such as fibromyalgia and chronic fatigue syndrome. We conducted five studies designed to develop and validate the Sensory Hypersensitive Scale (SHS); a 25-item self-report measure of sensory hypersensitivity. The SHS assesses both general sensitivity and modality-specific sensitivity (e.g. touch, taste, and hearing). 1202 participants (157 individuals with chronic pain) completed the SHS, which demonstrated an adequate overall internal reliability (Cronbach’s alpha) of 0.81, suggesting the tool can be used as a cross-modality assessment of sensitivity. SHS scores demonstrated only modest correlations (Pearson’s r) with depressive symptoms (0.19) and anxiety (0.28), suggesting a low level of overlap with psychiatric complaints. Overall SHS scores showed significant but relatively modest correlations (Pearson’s r) with three measures of sensory testing: cold pain tolerance (−0.34); heat pain tolerance (−0.285); heat pain threshold (−0.271). Women reported significantly higher scores on the SHS than did men, although gender-based differences were small. In a chronic pain sample, individuals with fibromyalgia syndrome demonstrated significantly higher SHS scores than did individuals with osteoarthritis or back pain. The SHS appears suitable as a screening measure for sensory hypersensitivity, though additional research is warranted to determine its suitability as a proxy for central sensitization. PMID:26873609

What makes the difference in people's lives when they have a mental disorder?

PubMed

Kamenov, Kaloyan; Cabello, María; Ballert, Carolina Saskia; Cieza, Alarcos; Chatterji, Somnath; Rojas, Diego; Cerón, Gloria; Bickenbach, Jerome; Ayuso-Mateos, José Luis; Sabariego, Carla

2018-01-01

The objective of this study was to identify which environmental factors are the most responsible for the disability experienced by persons with mental disorders and whether they differ (1) from those in cardiovascular diseases, chronic respiratory conditions, diabetes, and cancer, and (2) depending on the capacity level-a proxy for the impact of health conditions on the health state of individuals. Nationally representative data from 12,265 adults in Chile collected in 2015 with the WHO Model Disability Survey was analyzed. The availability of personal assistance, frequency of receiving personal assistance, and assistive devices for mobility were the most important environmental factors across mental and other non-communicable diseases. Perception of discrimination and use of health services were also prominent factors. There was a huge overlap between the factors found relevant for mental and other non-communicable diseases, but a substantial variability depending on the intensity of difficulties in capacity. This study challenges the appropriateness of disease-specific approaches and suggests that considering intrinsic capacity levels is more informative than focusing on diagnosis alone when comparing needs and barriers that affect the performance in daily life of specific groups of individuals.

Association between market concentration of hospitals and patient health gain following hip replacement surgery.

PubMed

Feng, Yan; Pistollato, Michele; Charlesworth, Anita; Devlin, Nancy; Propper, Carol; Sussex, Jon

2015-01-01

To assess the association between market concentration of hospitals (as a proxy for competition) and patient-reported health gains after elective primary hip replacement surgery. Patient Reported Outcome Measures data linked to NHS Hospital Episode Statistics in England in 2011/12 were used to analyse the association between market concentration of hospitals measured by the Herfindahl-Hirschman Index (HHI) and health gains for 337 hospitals. The association between market concentration and patient gain in health status measured by the change in Oxford Hip Score (OHS) after primary hip replacement surgery was not statistically significant at the 5% level both for the average patient and for those with more than average severity of hip disease (OHS worse than average). For 12,583 (49.1%) patients with an OHS before hip replacement surgery better than the mean, a one standard deviation increase in the HHI, equivalent to a reduction of about one hospital in the local market, was associated with a 0.104 decrease in patients' self-reported improvement in OHS after surgery, but this was not statistically significant at the 5% level. Hospital market concentration (as a proxy for competition) appears to have no significant influence (at the 5% level) on the outcome of elective primary hip replacement. The generalizability of this finding needs to be investigated. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

The PedsQL Multidimensional Fatigue Scale in type 1 diabetes: feasibility, reliability, and validity.

PubMed

Varni, James W; Limbers, Christine A; Bryant, William P; Wilson, Don P

2009-08-01

The Pediatric Quality of Life Inventory (PedsQL, Mapi Research Trust, Lyon, France; www.pedsql.org) is a modular instrument designed to measure health-related quality of life and disease-specific symptoms in children and adolescents. The PedsQL Multidimensional Fatigue Scale was designed as a child self-report and parent proxy-report generic symptom-specific instrument to measure fatigue in pediatric patients. The objective of the present study was to determine the feasibility, reliability, and validity of the PedsQL Multidimensional Fatigue Scale in type 1 diabetes. The 18-item PedsQL Multidimensional Fatigue Scale (General Fatigue, Sleep/Rest Fatigue, and Cognitive Fatigue domains) and the PedsQL 4.0 Generic Core Scales were administered to 83 pediatric patients with type 1 diabetes and 84 parents. The PedsQL Multidimensional Fatigue Scale evidenced minimal missing responses (0.3% child report and 0.3% parent report), achieved excellent reliability for the Total Fatigue Scale score (alpha= 0.92 child report, 0.94 parent report), distinguished between pediatric patients with diabetes and healthy children, and was significantly correlated with the PedsQL 4.0 Generic Core Scales supporting construct validity. Pediatric patients with diabetes experienced fatigue that was comparable to pediatric patients with cancer on treatment, demonstrating the relative severity of their fatigue symptoms. The results demonstrate the measurement properties of the PedsQL Multidimensional Fatigue Scale in type 1 diabetes. The findings suggest that the PedsQL Multidimensional Fatigue Scale may be utilized in the standardized evaluation of fatigue in pediatric patients with type 1 diabetes.

The Intolerance of Uncertainty Inventory: Validity and Comparison of Scoring Methods to Assess Individuals Screening Positive for Anxiety and Depression.

PubMed

Lauriola, Marco; Mosca, Oriana; Trentini, Cristina; Foschi, Renato; Tambelli, Renata; Carleton, R Nicholas

2018-01-01

Intolerance of Uncertainty is a fundamental transdiagnostic personality construct hierarchically organized with a core general factor underlying diverse clinical manifestations. The current study evaluated the construct validity of the Intolerance of Uncertainty Inventory, a two-part scale separately assessing a unitary Intolerance of Uncertainty disposition to consider uncertainties to be unacceptable and threatening (Part A) and the consequences of such disposition, regarding experiential avoidance, chronic doubt, overestimation of threat, worrying, control of uncertain situations, and seeking reassurance (Part B). Community members ( N = 1046; Mean age = 36.69 ± 12.31 years; 61% females) completed the Intolerance of Uncertainty Inventory with the Beck Depression Inventory-II and the State-Trait Anxiety Inventory. Part A demonstrated a robust unidimensional structure and an excellent convergent validity with Part B. A bifactor model was the best fitting model for Part B. Based on these results, we compared the hierarchical factor scores with summated ratings clinical proxy groups reporting anxiety and depression symptoms. Summated rating scores were associated with both depression and anxiety and proportionally increased with the co-occurrence of depressive and anxious symptoms. By contrast, hierarchical scores were useful to detect which facets mostly separated between for depression and anxiety groups. In sum, Part A was a reliable and valid transdiagnostic measure of Intolerance of Uncertainty. The Part B was arguably more useful for assessing clinical manifestations of Intolerance of Uncertainty for specific disorders, provided that hierarchical scores are used. Overall, our study suggest that clinical assessments might need to shift toward hierarchical factor scores.

The Intolerance of Uncertainty Inventory: Validity and Comparison of Scoring Methods to Assess Individuals Screening Positive for Anxiety and Depression

PubMed Central

Lauriola, Marco; Mosca, Oriana; Trentini, Cristina; Foschi, Renato; Tambelli, Renata; Carleton, R. Nicholas

2018-01-01

Intolerance of Uncertainty is a fundamental transdiagnostic personality construct hierarchically organized with a core general factor underlying diverse clinical manifestations. The current study evaluated the construct validity of the Intolerance of Uncertainty Inventory, a two-part scale separately assessing a unitary Intolerance of Uncertainty disposition to consider uncertainties to be unacceptable and threatening (Part A) and the consequences of such disposition, regarding experiential avoidance, chronic doubt, overestimation of threat, worrying, control of uncertain situations, and seeking reassurance (Part B). Community members (N = 1046; Mean age = 36.69 ± 12.31 years; 61% females) completed the Intolerance of Uncertainty Inventory with the Beck Depression Inventory-II and the State-Trait Anxiety Inventory. Part A demonstrated a robust unidimensional structure and an excellent convergent validity with Part B. A bifactor model was the best fitting model for Part B. Based on these results, we compared the hierarchical factor scores with summated ratings clinical proxy groups reporting anxiety and depression symptoms. Summated rating scores were associated with both depression and anxiety and proportionally increased with the co-occurrence of depressive and anxious symptoms. By contrast, hierarchical scores were useful to detect which facets mostly separated between for depression and anxiety groups. In sum, Part A was a reliable and valid transdiagnostic measure of Intolerance of Uncertainty. The Part B was arguably more useful for assessing clinical manifestations of Intolerance of Uncertainty for specific disorders, provided that hierarchical scores are used. Overall, our study suggest that clinical assessments might need to shift toward hierarchical factor scores. PMID:29632505

Children With Anorectal Malformations, Hirschsprung Disease, and Their Siblings: Proxy Reports and Self-Reports.

PubMed

Hartman, Esther E; Oort, Frans J; Aronson, Daniel C; van der Steeg, Alida F W; Heij, Hugo A; van Heurn, Ernest; Madern, Gerard C; van der Zee, David C; de Blaauw, Ivo; van Dijk, A; Sprangers, Mirjam A G

2015-12-01

The aim of the present study was to compare parent proxy reports with that of self-reports of children with anorectal malformations (ARMs) or Hirschsprung disease (HD) and healthy siblings and thereafter was examine whether these comparisons differed between patients and their siblings. Parents (n = 98) of either children with ARM (n = 44) or HD (n = 54) and a healthy sibling (n = 98) recruited from the 6 Dutch pediatric surgical centers and from the ARM and HD patient societies were included in this cross-sectional multilevel study. Agreement between child self-reports and parent proxy reports was compared through mean differences and through (intraclass) correlations. We conducted multilevel analyses to take dependencies between assessments within families into account. All of the children (children with ARM or HD and their siblings) reported more pain and symptoms than their parents reported. We also found that only children with ARM or HD reported less positive emotions than their parents. Furthermore, higher correlations were found between parent proxy reports and patient-self reports than between parent proxy reports and sibling self-reports on cognitive functioning and social interaction. Parents tend to overestimate the physical functioning of both their ill and healthy children, and overestimate the emotional functioning of only their children with ARM or HD. Furthermore, children with ARM or HD and parents agree more on health-related quality of life domains than healthy children and parents.

The association between creatinine versus cystatin C-based eGFR and cardiovascular risk in children with chronic kidney disease using a modified PDAY risk score.

PubMed

Sharma, Sheena; Denburg, Michelle R; Furth, Susan L

2017-08-01

Children with chronic kidney disease (CKD) have a high prevalence of cardiovascular disease (CVD) risk factors which may contribute to the development of cardiovascular events in adulthood. Among adults with CKD, cystatin C-based estimates of glomerular filtration rate (eGFR) demonstrate a stronger predictive value for cardiovascular events than creatinine-based eGFR. The PDAY (Pathobiological Determinants of Atherosclerosis in Youth) risk score is a validated tool used to estimate the probability of advanced coronary atherosclerotic lesions in young adults. To assess the association between cystatin C-based versus creatinine-based eGFR (eGFR cystatin C and eGFR creatinine, respectively) and cardiovascular risk using a modified PDAY risk score as a proxy for CVD in children and young adults. We performed a cross-sectional study of 71 participants with CKD [median age 15.5 years; inter-quartile range (IQR) 13, 17], and 33 healthy controls (median age 15.1 years; IQR 13, 17). eGFR was calculated using age-appropriate creatinine- and cystatin C-based formulas. Median eGFR creatinine and eGFR cystatin C for CKD participants were 50 (IQR 30, 75) and 53 (32, 74) mL/min/1.73 m 2 , respectively. For the healthy controls, median eGFR creatinine and eGFR cystatin were 112 (IQR 85, 128) and 106 mL/min/1.73m 2 (95, 123) mL/min/1.73 m 2 , respectively. A modified PDAY risk score was calculated based on sex, age, serum lipoprotein concentrations, obesity, smoking status, hypertension, and hyperglycemia. Modified PDAY scores ranged from -2 to 20. The Spearman's correlations of eGFR creatinine and eGFR cystatin C with coronary artery PDAY scores were -0.23 (p = 0.02) and -0.28 (p = 0.004), respectively. Ordinal logistic regression also showed a similar association of higher eGFR creatinine and higher eGFR cystatin C with lower PDAY scores. When stratified by age <18 or ≥18 years, the correlations of eGFR creatinine and eGFR cystatin C with PDAY score were modest and similar in children [-0.29 (p = 0.008) vs. -0.32 (p = 0.004), respectively]. Despite a smaller sample size, the correlation in adults was stronger for eGFR cystatin C (-0.57; p = 0.006) than for eGFR creatinine (-0.40; p = 0.07). Overall, the correlation between cystatin C- or creatinine-based eGFR with PDAY risk score was similar in children. Further studies in children with CKD should explore the association between cystatin C and cardiovascular risk.

African American ethnicity as a risk factor for respiratory complications following adenotonsillectomy.

PubMed

Horwood, Linda; Nguyen, Lily H P; Brown, Karen; Paci, Philippe; Constantin, Evelyn

2013-02-01

To evaluate whether African American ethnicity is a risk factor for major respiratory complications following adenotonsillectomy (T&A). Retrospective cohort study. A Canadian tertiary care center. PATIENTS Children aged 0 to 18 years who underwent T&A at our institution from 2002 to 2006 with planned or unplanned postoperative admissions. We evaluated the association between ethnicity and our main outcome measure, major perioperative respiratory complications of T&A. Parental report of ethnicity was available for 23% of our cohort. At our institution, African American children undergo a routine preoperative sickle cell test (TestSC). Data on TestSC were included for all children. We established that having a TestSC was an accurate proxy for African American ethnicity (sensitivity, 96%; specificity, 93%; positive predictive value, 77%; negative predictive value, 99%). Seventy-four of 594 children experienced major respiratory complications (12.5%). Compared with children who did not have major respiratory complications, those who did had a TestSC (P = .01), were 2 years or younger (P < .001) and had lower weight-for-age z scores (P = .04), moderate to severe obstructive sleep apnea (P = .003), and comorbidities (P < .001). When controlling for these variables in a multivariate analysis, children of African American ethnicity (TestSC used as a proxy) were at higher risk of having major perioperative respiratory complications (adjusted odds ratio, 1.82 [95% CI 1.05-3.14]) (P = .003). Children of African American ethnicity (TestSC used as a proxy) are nearly twice as likely to experience major respiratory complications related to T&A. Ethnicity may be an additional independent risk factor for clinicians to consider when planning for T&A.

Simple new risk score model for adult cardiac extracorporeal membrane oxygenation: simple cardiac ECMO score.

PubMed

Peigh, Graham; Cavarocchi, Nicholas; Keith, Scott W; Hirose, Hitoshi

2015-10-01

Although the use of cardiac extracorporeal membrane oxygenation (ECMO) is increasing in adult patients, the field lacks understanding of associated risk factors. While standard intensive care unit risk scores such as SAPS II (simplified acute physiology score II), SOFA (sequential organ failure assessment), and APACHE II (acute physiology and chronic health evaluation II), or disease-specific scores such as MELD (model for end-stage liver disease) and RIFLE (kidney risk, injury, failure, loss of function, ESRD) exist, they may not apply to adult cardiac ECMO patients as their risk factors differ from variables used in these scores. Between 2010 and 2014, 73 ECMOs were performed for cardiac support at our institution. Patient demographics and survival were retrospectively analyzed. A new easily calculated score for predicting ECMO mortality was created using identified risk factors from univariate and multivariate analyses, and model discrimination was compared with other scoring systems. Cardiac ECMO was performed on 73 patients (47 males and 26 females) with a mean age of 48 ± 14 y. Sixty-four percent of patients (47/73) survived ECMO support. Pre-ECMO SAPS II, SOFA, APACHE II, MELD, RIFLE, PRESERVE, and ECMOnet scores, were not correlated with survival. Univariate analysis of pre-ECMO risk factors demonstrated that increased lactate, renal dysfunction, and postcardiotomy cardiogenic shock were risk factors for death. Applying these data into a new simplified cardiac ECMO score (minimal risk = 0, maximal = 5) predicted patient survival. Survivors had a lower risk score (1.8 ± 1.2) versus the nonsurvivors (3.0 ± 0.99), P < 0.0001. Common intensive care unit or disease-specific risk scores calculated for cardiac ECMO patients did not correlate with ECMO survival, whereas a new simplified cardiac ECMO score provides survival predictability. Copyright © 2015 Elsevier Inc. All rights reserved.

Munchausen syndrome by proxy mimicking as Gaucher disease.

PubMed

Al-Owain, Mohammed; Al-Zaidan, Hamad; Al-Hashem, Amal; Kattan, Hoda; Al-Dowaish, Abdullah

2010-08-01

Although rare, Munchausen syndrome by proxy (MBP) is a potentially life-threatening form of child abuse. Here, we report a 19-month-old female infant who presented with hepatosplenomegaly, anemia, thrombocytopenia, and recurrent septicemia. She was initially thought to have myelodysplastic syndrome. Further hematological and immunological investigations revealed no cause. beta-Glucosylceramidase enzyme activity on dried blood spot was suggestive of Gaucher disease. However, the enzyme level on cultured skin fibroblast was not consistent with Gaucher disease. The first hint about MBP was the recurrent sepsis with numerous gram negative rods. Furthermore, the mother's behavior and health history raised our suspicion about MBP. The child showed significant improvement after she was separated from the mother for a week. Finally, the mother confessed that she was spitting in local herbs and injecting it into the central line. This is, to our knowledge, the first report of MBP resembling in its presentation Gaucher disease. This case should alert the general and specialized pediatricians about MBP, as it may mimic metabolic diseases like Gaucher disease.

Acute admissions to medical departments in Denmark: diagnoses and patient characteristics.

PubMed

Vest-Hansen, Betina; Riis, Anders Hammerich; Sørensen, Henrik Toft; Christiansen, Christian Fynbo

2014-09-01

Despite extensive research on individual diseases, population-based knowledge about reasons for acute medical admissions remains limited. Our aim was to examine primary diagnoses, Charlson Comorbidity Index (CCI) score, age, and gender among patients admitted acutely to medical departments in Denmark. In this population-based observational study, 264,265 acute medical patients admitted during 2010 were identified in the Danish National Registry of Patients (DNRP), covering all hospitals in Denmark. Reasons for acute admissions were assessed by primary diagnoses, grouped according to the International Classification of Diseases 10th edition. Additionally, the CCI score, age and gender were presented according to each diagnostic group. Two-thirds of the patients had one of the four following reasons for admission: cardiovascular diseases (19.3%), non-specific Z-diagnoses ("Factors influencing health status and contact with health services") (16.9%), infectious diseases (15.5%), and non-specific R-diagnoses ("Symptoms and abnormal findings, not elsewhere classified") (11.8%). In total, 45% of the patients had a CCI score of one or more and there was a considerable overlap between the patients' chronic diseases and the reason for admission. The median age of the study population was 64 years (IQR 47-77 years), ranging from 46 years (IQR 27-66) for injury and poisoning to 74 years (IQR 60-83) for hematological diseases. Gender representation varied considerably within the diagnostic groups, for example with male predominance in mental disorders (59.0%) and female predominance in diseases of the musculoskeletal system (57.8%). Our study identifies that acute medical patients often present with non-specific symptoms or complications related to their chronic diseases. Copyright © 2014 European Federation of Internal Medicine. Published by Elsevier B.V. All rights reserved.

Estimation of mean response via effective balancing score

PubMed Central

Hu, Zonghui; Follmann, Dean A.; Wang, Naisyin

2015-01-01

Summary We introduce effective balancing scores for estimation of the mean response under a missing at random mechanism. Unlike conventional balancing scores, the effective balancing scores are constructed via dimension reduction free of model specification. Three types of effective balancing scores are introduced: those that carry the covariate information about the missingness, the response, or both. They lead to consistent estimation with little or no loss in efficiency. Compared to existing estimators, the effective balancing score based estimator relieves the burden of model specification and is the most robust. It is a near-automatic procedure which is most appealing when high dimensional covariates are involved. We investigate both the asymptotic and the numerical properties, and demonstrate the proposed method in a study on Human Immunodeficiency Virus disease. PMID:25797955

Occupational characteristics and the progression of carotid artery intima-media thickness and plaque over 9 years: the Multi-Ethnic Study of Atherosclerosis (MESA)

PubMed Central

Fujishiro, Kaori; Diez Roux, Ana V; Landsbergis, Paul; Kaufman, Joel D; Korcarz, Claudia E; Stein, James H

2015-01-01

Objectives The role of occupation in the development of cardiovascular disease (CVD) remains a topic of research because few studies have examined longitudinal associations, and because occupation can be an indicator of socioeconomic position (SEP) and a proxy for hazard exposure. This study examines associations of occupational category as an SEP marker and selected occupational exposures with progression of the subclinical carotid artery disease. Methods A community-based, multiethnic sample (n=3109, mean age=60.2) provided subclinical CVD measures at least twice at three data collection points (mean follow-up=9.4 years). After accounting for demographic characteristics, SEP, and traditional CVD risk factors, we modelled common carotid intima-media thickness, carotid plaque scores, and carotid plaque shadowing as a function of occupational category, physical hazard exposure, physical activity on the job, interpersonal stress, job control and job demands. These job characteristics were derived from the Occupational Resource Network (O*NET). Random coefficient models were used to account for repeated measures and time-varying covariates. Results There were a few statistically significant associations at baseline. After all covariates were included in the model, men in management, office/sales, service and blue-collar jobs had 28–44% higher plaque scores than professionals at baseline (p=0.001). Physically hazardous jobs were positively associated with plaque scores among women (p=0.014). However, there were no significant longitudinal associations between any of the occupational characteristics and any of the subclinical CVD measures. Conclusions There was little evidence that the occupational characteristics examined in this study accelerated the progression of subclinical CVD. PMID:25217203

An integrative examination of general personality dysfunction in a large community sample.

PubMed

Hengartner, Michael Pascal; De Fruyt, Filip; Rodgers, Stephanie; Müller, Mario; Rössler, Wulf; Ajdacic-Gross, Vladeta

2014-10-01

Recently, the severity of general personality dysfunction has gained broad interest in personality disorder (PD) research. We analysed data of 511 participants aged 20-41 years from a comprehensive psychiatric survey in the general population of Zurich, Switzerland. We added the trait-scores from all DSM-IV PDs, as assessed by a self-report questionnaire, to provide a measure of general personality dysfunction. Adjusting for the Big Five personality domains as a proxy for stylistic PD elements, this composite PD score exhibited strong associations with neuroticism and schizotypy. General personality dysfunction additionally revealed a moderate detrimental association with psychosocial functioning and a strong effect on coping resources, on heavy drinking and drug use and on most psychopathological syndromes. Of particular interest is the strong association with total psychopathological distress and co-occurrence of multiple disorders, suggesting that increasing PD severity relates to the degree of global impairment independent of specific PD traits. Discussed herein are implications for public mental health policies, classification, conceptualization and treatment of PDs. Copyright © 2014 John Wiley & Sons, Ltd.

Linkage analysis in nuclear families. 2: Relationship between affected sib-pair tests and lod score analysis.

PubMed

Knapp, M; Seuchter, S A; Baur, M P

1994-01-01

It is believed that the main advantage of affected sib-pair tests is that their application requires no information about the underlying genetic mechanism of the disease. However, here it is proved that the mean test, which can be considered the most prominent of the affected sib-pair tests, is equivalent to lod score analysis for an assumed recessive mode of inheritance, irrespective of the true mode of the disease. Further relationships of certain sib-pair tests and lod score analysis under specific assumed genetic modes are investigated.

[Arthur Vick Prize 2017 of the German Society of Orthopaedic Rheumatology].

PubMed

Bause, L; Niemeier, A; Krenn, V

2018-03-01

The German Society of Orthopaedic Rheumatology (DGORh) honored Prof. Dr. med. Veit Krenn (MVZ-ZHZMD-Trier) with the Arthur Vick Prize 2017. With this award, scientific results with high impact on the diagnosis, therapy and pathogenetic understanding of rheumatic diseases are honored. In cooperation with pathologists and colleagues from various clinical disciplines Prof. Dr. med. Veit Krenn developed several histopathologic scoring systems which contribute to the diagnosis and pathogenetic understanding of degenerative and rheumatic diseases. These scores include the synovitis score, the meniscal degeneration score, the classification of periprosthetic tissues (SLIM classification), the arthrofibrosis score, the particle score and the CD15 focus score. Of highest relevance for orthopedic rheumatology is the synovitis score which is a semiquantitative score for evaluating immunological and inflammatory changes of synovitis in a graded manner. Based on this score, it is possible to divide results into low-grade synovitis and high-grade synovitis: a synovitis score of 1-4 is called low-grade synovitis and occurs for example in association with osteoarthritis (OA), post-trauma, with meniscal lesions and hemochromatosis. A synovitis score of 5-9 is called high-grade synovitis, e.g. rheumatoid arthritis, psoriatic arthritis, Lyme arthritis, postinfection and reactive arthritis as well as peripheral arthritis with Bechterew's disease (sensitivity 61.7%, specificity 96.1%). The first publication (2002) and an associated subsequent publication (2006) of the synovitis score has led to national and international acceptance of this score as the standard for histopathological assessment of synovitis. The synovitis score provides a diagnostic, standardized and reproducible histopathological evaluation method for joint diseases, particularly when this score is applied in the context with the joint pathology algorithm.

[Analysis of results of Assessment on National Parasitic Disease Control and Prevention Techniques in 2015].

PubMed

Yao, Ruan; Li-Ying, Wang; Ting-Jun, Zhu; Men-Bao, Qian; Chun-Li, Cao; Yu-Wan, Hao; Tian, Tian; Shi-Zhu, Li

2017-03-01

To assess the theoretical knowledge and practical skills of parasitic diseases among technicians from disease control and prevention institutions. The Assessment on National Parasitic Disease Control and Prevention Techniques was organized in September, 2015. Together, 124 subjects from disease control and prevention institutions at province, prefecture or county levels in 31 provinces joined the assessment. A database was built consisting of subjects' basic information and assessment scores. Statistical analysis was used to analyze the scores by gender, age, professional title, institutions and places of participants. The average total score of all the subjects was 123.3, with a passing rate of 57.3%. The average scores of male subjects (48 subjects) and female subjects (76 subjects) were 125.9 and 121.7 respectively; the average scores of the subjects aged under 30 years (57 subjects), between 30 and 40 years (61 subjects) and above 40 years (6 subjects) were 119.6, 128.1 and 111.2 respectively; the average scores of persons with junior (94 subjects), intermediate (28 subjects) and senior (2 subjects) professional titles were 119.2, 135.9 and 140.5 respectively. The average theoretical assessment score of all the subjects was 61.9, with a passing rate of 62.9%. The average practical skill assessment score of all the subjects was 61.4, with a passing rate of 58.1%. The theoretical assessment results range widely. The theoretical knowledge results of technicians from disease control and prevention institutions are low in general. Therefore, the specific training based on daily work needs to be enhanced.

Gender-dependence of substituted judgment on quality of life in patients with dementia

PubMed Central

2011-01-01

Background Substituted judgment asks the proxy to decide what the patient would have decided, had he or she been competent. It is unclear whether substituted judgment of the patient's quality of life can serve as a surrogate measure in patients with dementia. Methods 212 patients with dementia and their proxies were interviewed in their homes. Dementia syndrome was characterized with cognitive, non-cognitive and functional scales. Quality of life (QoL) was assessed with the QoL-AD. Results Substituted judgment of the patient's QoL was unrelated to dementia severity but also correlated with the proxie's own QoL (r = 0.356; p < 0.001). Gender-specific analysis reveals that for male proxies the most important variable is severity of patient's depression (r = -0.895; p = 0.001) while for female proxies it is the proxie's own QoL (r = 0.371; p < 0.001). Subjective burden correlates with the proxie's QoL in females (r = -0.282; p = 0.001) but not in males (r = -0.163, p = 0.161). Conclusion Substituted judgment of the patient's QoL does not correlate with dementia severity. Substituted judgment is subject to proxy-related variables in a gender-dependent fashion and therefore not suited to serve as an appropriate surrogate of the patients' quality of life. PMID:21961477

Engaged Lifestyle, Personality, and Mental Status Among Centenarians

PubMed Central

Baenziger, Joan; MacDonald, Maurice; Siegler, Ilene C.; Poon, Leonard W.

2010-01-01

This study assessed engaged lifestyle activities (e.g., volunteering, traveling, and public speaking) for centenarians of the Georgia Centenarian Study. A total of 285 centenarians and near-centenarians (i.e., 98 years and older) and their proxy informants participated in this study. The Mini-Mental Status Examination (MMSE) was assessed for all centenarians, and proxy informants reported on lifestyle activities and personality traits of the centenarians. Results suggested that participants who had volunteered, traveled, and those who had given public talks and balanced their checkbooks were more likely to show relatively high mental status scores (i.e., MMSE > 17). Personality traits were found to be moderators in the relationship between engaged lifestyle and mental status: Participants with high levels of Emotional Stability, Extraversion, Openness, and Conscientiousness and with high levels of engaged lifestyle were more likely to show relatively high mental status scores (i.e., MMSE > 17), whereas participants with low levels of Emotional Stability, Extraversion, Openness, Agreeableness, and Conscientiousness and with low levels of engaged lifestyle were more likely to show relatively low mental status scores (i.e., MMSE < 18). The results suggest that engaged lifestyle, particularly in combination with personality traits, plays an important role in the level of cognitive functioning among oldest old adults. PMID:21132076

Development of a Pediatric Ebola Predictive Score, Sierra Leone1.

PubMed

Fitzgerald, Felicity; Wing, Kevin; Naveed, Asad; Gbessay, Musa; Ross, J C G; Checchi, Francesco; Youkee, Daniel; Jalloh, Mohamed Boie; Baion, David E; Mustapha, Ayeshatu; Jah, Hawanatu; Lako, Sandra; Oza, Shefali; Boufkhed, Sabah; Feury, Reynold; Bielicki, Julia; Williamson, Elizabeth; Gibb, Diana M; Klein, Nigel; Sahr, Foday; Yeung, Shunmay

2018-02-01

We compared children who were positive for Ebola virus disease (EVD) with those who were negative to derive a pediatric EVD predictor (PEP) score. We collected data on all children <13 years of age admitted to 11 Ebola holding units in Sierra Leone during August 2014-March 2015 and performed multivariable logistic regression. Among 1,054 children, 309 (29%) were EVD positive and 697 (66%) EVD negative, with 48 (5%) missing. Contact history, conjunctivitis, and age were the strongest positive predictors for EVD. The PEP score had an area under receiver operating characteristics curve of 0.80. A PEP score of 7/10 was 92% specific and 44% sensitive; 3/10 was 30% specific, 94% sensitive. The PEP score could correctly classify 79%-90% of children and could be used to facilitate triage into risk categories, depending on the sensitivity or specificity required.

Influence of the right- versus left-sided sleeping position on the apnea-hypopnea index in patients with sleep apnea.

PubMed

Ozeke, Ozcan; Erturk, Ozcan; Gungor, Mutlu; Hızel, Serap Bılen; Aydın, Dilek; Celenk, Mehmet Kutlu; Dıncer, Hazim; Ilıcın, Gurler; Ozgen, Fuat; Ozer, Can

2012-09-01

Sleep and sleep position have a significant impact on physical, cardiac and mental health, and have been evaluated in numerous studies particularly in terms of lateral sleeping positions and their association with diseases. We retrospectively examined the relationship between the sleeping position and position-specific apnea-hypopnea index (AHI) in obstructive sleep apnea-hypopnea (OSA) patients. We assessed the sleeping body position and the body position-specific AHI score in patients who were referred for suspected OSA and underwent diagnostic nocturnal polysomnography. In order to eliminate inter-individual differences, only those who had a similar percentage of time spent in the LSSP and RSSP for each patient were enrolled. To provide this validity, only subjects that had a similar percentage of left and right lateral sleep time (±10%) were included in the analysis. A total of 864 patients had nocturnal diagnostic PSG. Of them, 131 patients met the inclusion criteria. The percent rate spent in the supine sleeping position (SSP) was 31.3 ± 18.7%, in the LSSP was 31.8 ± 10% and in the RSSP was 32.6 ± 10.8%. Whereas the SSP-specific AHI score was the highest with 60.4 ± 36.2/h among all the sleeping position-specific AHI scores (p < 0.001), the LSSP-specific AHI score was statistically higher than that for RSSP (30.2 ± 32.6/h vs. 23.6 ± 30.1/h; p < 0.001). When comparing individuals sub-grouped based on OSA severity, there was a statistically significant difference between the LSSP-specific AHI score and RSSP-specific AHI score in patients with severe (p = 0.002) and moderate (p = 0.026), but not mild (p = 0.130) OSA. We found that the sleeping position had a significant influence on apneic events and RSSP decreased the frequency of obstructive respiratory events in patients with moderate and severe disease.

Deaths rise in good economic times: evidence from the OECD.

PubMed

Gerdtham, Ulf-G; Ruhm, Christopher J

2006-12-01

This study uses aggregate data for 23 Organization for Economic Cooperation and Development (OECD) countries over the 1960-1997 period to examine the relationship between macroeconomic conditions and deaths. The main finding is that total mortality and deaths from several common causes rise when labor markets strengthen. For instance, controlling for year effects, location fixed-effects (FE), country-specific time trends and demographic characteristics, a 1% point decrease in the national unemployment rate is associated with growth of 0.4% in total mortality and the following increases in cause-specific mortality: 0.4% for cardiovascular disease, 1.1% for influenza/pneumonia, 1.8% for liver disease, 2.1% for motor vehicle deaths, and 0.8% for other accidents. These effects are particularly pronounced for countries with weak social insurance systems, as proxied by public social expenditure as a share of GDP. The findings are consistent with evidence provided by other recent research and cast doubt on the hypothesis that economic downturns have negative effects on physical health.

Patients with Revision Modern Megaprostheses of the Distal Femur Have Improved Disease-Specific and Health-Related Outcomes Compared to Those with Primary Replacements.

PubMed

Heyberger, Clémence; Auberger, Guillaume; Babinet, Antoine; Anract, Philippe; Biau, David J

2017-12-21

We asked whether there would be any difference between primary and revision modern cemented fixed hinge megaprosthesis of the distal femur in function and activity-related outcomes following treatment of a bone tumor. An identical custom-made fixed hinge cemented megaprosthesis with a hydroxyapatite collar was used in all cases. The main outcomes were joint-specific function, disease-specific activity, and health-related quality of life. Implant survival was also evaluated. Patients in the revision group performed slightly better than patients in the primary group on disease-specific (Toronto Extremity Salvage Score, p  = 0.033; Musculoskeletal Tumor Society, p  = 0.072) and health-related outcomes (Short Form 36 [SF-36] physical component, p  = 0.085; SF-36 mental component, p  = 0.069) but not on joint-specific outcomes (Knee Society Score, p  = 0.94). The cumulative probabilities of revision for any reason were 14.5% (7-25%) at 5 years with no statistically significant difference between primary and revision procedures ( p  = 0.77). In conclusion, patients undergoing a revision have similar joint-specific functional outcome but improved disease-specific and health-related outcomes. Implant survival are similar between groups. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Role of the Egami score to predict immunoglobulin resistance in Kawasaki disease among a Western Mediterranean population.

PubMed

Sánchez-Manubens, Judith; Antón, Jordi; Bou, Rosa; Iglesias, Estíbaliz; Calzada-Hernandez, Joan; Borlan, Sergi; Gimenez-Roca, Clara; Rivera, Josefa

2016-07-01

Kawasaki disease is an acute self-limited systemic vasculitis common in childhood. Intravenous immunoglobulin (IVIG) is an effective treatment, and it reduces the incidence of cardiac complications. Egami score has been validated to identify IVIG non-responder patients in Japanese population, and it has shown high sensitivity and specificity to identify these non-responder patients. Although its effectiveness in Japan, Egami score has shown to be ineffective in non-Japanese populations. The aim of this study was to apply the Egami score in a Western Mediterranean population in Catalonia (Spain). Observational population-based study that includes patients from all Pediatric Units in 33 Catalan hospitals, both public and private management, between January 2004 and March 2014. Sensitivity and specificity for the Egami score was calculated, and a logistic regression analysis of predictors of overall response to IVIG was also developed. Predicting IVIG resistance with a cutoff for Egami score ≥3 obtained 26 % sensitivity and 82 % specificity. Negative predictive value was 85 % and positive predictive value 22 %. This low sensitivity implies that three out of four non-responders will not be identified by the Egami score. Besides, logistic regression models did not found significance for the use of the Egami score to predict IVIG resistance in Catalan population although having an area under the ROC curve of 0.618 (IC 95 % 0.538-0.698, p < 0.001). Although regression models found an area under the ROC curve >0.5 to predict IVIG resistance, the low sensitivity excludes the Egami score as a useful tool to predict IVIG resistance in Catalan population.

Comparing proxy and model estimates of hydroclimate variability and change over the Common Era

NASA Astrophysics Data System (ADS)

Hydro2k Consortium, Pages

2017-12-01

Water availability is fundamental to societies and ecosystems, but our understanding of variations in hydroclimate (including extreme events, flooding, and decadal periods of drought) is limited because of a paucity of modern instrumental observations that are distributed unevenly across the globe and only span parts of the 20th and 21st centuries. Such data coverage is insufficient for characterizing hydroclimate and its associated dynamics because of its multidecadal to centennial variability and highly regionalized spatial signature. High-resolution (seasonal to decadal) hydroclimatic proxies that span all or parts of the Common Era (CE) and paleoclimate simulations from climate models are therefore important tools for augmenting our understanding of hydroclimate variability. In particular, the comparison of the two sources of information is critical for addressing the uncertainties and limitations of both while enriching each of their interpretations. We review the principal proxy data available for hydroclimatic reconstructions over the CE and highlight the contemporary understanding of how these proxies are interpreted as hydroclimate indicators. We also review the available last-millennium simulations from fully coupled climate models and discuss several outstanding challenges associated with simulating hydroclimate variability and change over the CE. A specific review of simulated hydroclimatic changes forced by volcanic events is provided, as is a discussion of expected improvements in estimated radiative forcings, models, and their implementation in the future. Our review of hydroclimatic proxies and last-millennium model simulations is used as the basis for articulating a variety of considerations and best practices for how to perform proxy-model comparisons of CE hydroclimate. This discussion provides a framework for how best to evaluate hydroclimate variability and its associated dynamics using these comparisons and how they can better inform interpretations of both proxy data and model simulations. We subsequently explore means of using proxy-model comparisons to better constrain and characterize future hydroclimate risks. This is explored specifically in the context of several examples that demonstrate how proxy-model comparisons can be used to quantitatively constrain future hydroclimatic risks as estimated from climate model projections.

Comparing Proxy and Model Estimates of Hydroclimate Variability and Change over the Common Era

NASA Technical Reports Server (NTRS)

Smerdon, Jason E.; Luterbacher, Jurg; Phipps, Steven J.; Anchukaitis, Kevin J.; Ault, Toby; Coats, Sloan; Cobb, Kim M.; Cook, Benjamin I.; Colose, Chris; Felis, Thomas;

Subvalvular apparatus and adverse outcome of balloon valvotomy in rheumatic mitral stenosis.

PubMed

Bhalgat, Parag; Karlekar, Shrivallabh; Modani, Santosh; Agrawal, Ashish; Lanjewar, Charan; Nabar, Ashish; Kerkar, Prafulla; Agrawal, Nandu; Vaideeswar, Pradeep

2015-01-01

Balloon mitral valvotomy (BMV) is a well-established therapeutic modality for rheumatic mitral stenosis (RMS). However, there are chances of procedural failure and the more ominous post-procedural severe mitral regurgitation. There are only a few prospective studies, which have evaluated the pathogenic mechanisms for these major complications of BMV, especially in relation to the subvalvular apparatus (SVA) pathology. All symptomatic patients of RMS suitable for BMV by echocardiographic criteria in a span of 1 year were selected. In addition to the standard echocardiographic assessment of RMS (Wilkins score and score by Padial et al.), a separate grading and scoring system was assigned to evaluate the severity of the SVA pathology. The SVA score was 'I', when none of the two SVAs had severe disease, 'II' when one of the two SVAs has severe disease, and 'III' when both SVAs had severe disease. With these scoring systems, the outcomes of BMV (successful procedure, failure, and post-procedural mitral regurgitation) were analyzed. Emergency valve replacement was performed depending on clinical situation, and in cases of replacement, the pathology of the excised mitral valves were compared with echocardiographic findings. Of the 356 BMVs performed in a year, 43 patients had adverse outcomes in the form of failed procedure (14 patients) and mitral regurgitation (29 patients). Forty-one among these had a SVA score of III. The sensitivity and specificity of the MR score was lesser than the SVA score (sensitivity 0.34 vs. 1.00, specificity 0.92 vs. 0.99, respectively). The mitral valvular morphology in 39 patients who underwent post-procedural valve replacements correlated well with echocardiography findings. It is important to assess the degree of SVA pathology in the conventional echocardiographic assessment for RMS, as BMV would have adverse events when both SVAs were severely diseased. Copyright © 2015 Cardiological Society of India. Published by Elsevier B.V. All rights reserved.

Novel risk score of contrast-induced nephropathy after percutaneous coronary intervention.

PubMed

Ji, Ling; Su, XiaoFeng; Qin, Wei; Mi, XuHua; Liu, Fei; Tang, XiaoHong; Li, Zi; Yang, LiChuan

2015-08-01

Contrast-induced nephropathy (CIN) post-percutaneous coronary intervention (PCI) is a major cause of acute kidney injury. In this study, we established a comprehensive risk score model to assess risk of CIN after PCI procedure, which could be easily used in a clinical environment. A total of 805 PCI patients, divided into analysis cohort (70%) and validation cohort (30%), were enrolled retrospectively in this study. Risk factors for CIN were identified using univariate analysis and multivariate logistic regression in the analysis cohort. Risk score model was developed based on multiple regression coefficients. Sensitivity and specificity of the new risk score system was validated in the validation cohort. Comparisons between the new risk score model and previous reported models were applied. The incidence of post-PCI CIN in the analysis cohort (n = 565) was 12%. Considerably high CIN incidence (50%) was observed in patients with chronic kidney disease (CKD). Age >75, body mass index (BMI) >25, myoglobin level, cardiac function level, hypoalbuminaemia, history of chronic kidney disease (CKD), Intra-aortic balloon pump (IABP) and peripheral vascular disease (PVD) were identified as independent risk factors of post-PCI CIN. A novel risk score model was established using multivariate regression coefficients, which showed highest sensitivity and specificity (0.917, 95%CI 0.877-0.957) compared with previous models. A new post-PCI CIN risk score model was developed based on a retrospective study of 805 patients. Application of this model might be helpful to predict CIN in patients undergoing PCI procedure. © 2015 Asian Pacific Society of Nephrology.

Quality of Life Is Impaired in Men with Chronic Prostatitis

PubMed Central

McNaughton Collins, Mary; Pontari, Michel A; O'Leary, Michael P; Calhoun, Elizabeth A; Santanna, Jill; Landis, J Richard; Kusek, John W; Litwin, Mark S

2001-01-01

OBJECTIVE Health-related quality of life (HRQOL) impairment may be a central component of chronic prostatitis for men afflicted with this condition. Our objective was to examine HRQOL, and factors associated with HRQOL, using both general and condition-specific instruments. DESIGN Chronic Prostatitis Cohort (CPC) study. SETTING Six clinical research centers across the United States and Canada. PARTICIPANTS Two hundred seventy-eight men with chronic prostatitis. MEASUREMENTS AND MAIN RESULTS The Short Form 12 (SF-12) Mental Component Summary (MCS) and Physical Component Summary (PCS), and the National Institutes of Health Chronic Prostatitis Symptom Index (NIH-CPSI) were measures used. CPC subjects' MCS scores (44.0 ± 9.8) were lower than those observed in the most severe subgroups of patients with congestive heart failure and diabetes mellitus, and PCS scores (46.4±9.5) were worse than those among the general U.S. male population. Decreasing scores were seen in both domains with worsening symptom severity (P< .01). History of psychiatric disease and younger age were strongly associated with worse MCS scores, whereas history of rheumatologic disease was associated with worse PCS scores. Predictors of more severe NIH-CPSI scores included lower educational level and lower income; history of rheumatic disease was associated with higher scores. CONCLUSIONS Men with chronic prostatitis experience impairment in the mental and physical domains of general HRQOL, as well as condition-specific HRQOL. To optimize the care of men with this condition, clinicians should consider administering HRQOL instruments to their patients to better understand the impact of the condition on patients' lives. PMID:11679032

Research options for controlling zoonotic disease in India, 2010-2015.

PubMed

Sekar, Nitin; Shah, Naman K; Abbas, Syed Shahid; Kakkar, Manish

2011-02-25

Zoonotic infections pose a significant public health challenge for low- and middle-income countries and have traditionally been a neglected area of research. The Roadmap to Combat Zoonoses in India (RCZI) initiative conducted an exercise to systematically identify and prioritize research options needed to control zoonoses in India. Priority setting methods developed by the Child Health and Nutrition Research Initiative were adapted for the diversity of sectors, disciplines, diseases and populations relevant for zoonoses in India. A multidisciplinary group of experts identified priority zoonotic diseases and knowledge gaps and proposed research options to address key knowledge gaps within the next five years. Each option was scored using predefined criteria by another group of experts. The scores were weighted using relative ranks among the criteria based upon the feedback of a larger reference group. We categorized each research option by type of research, disease targeted, factorials, and level of collaboration required. We analysed the research options by tabulating them along these categories. Seventeen experts generated four universal research themes and 103 specific research options, the majority of which required a high to medium level of collaboration across sectors. Research options designated as pertaining to 'social, political and economic' factorials predominated and scored higher than options focussing on ecological, genetic and biological, or environmental factors. Research options related to 'health policy and systems' scored highest while those related to 'research for development of new interventions' scored the lowest. We methodically identified research themes and specific research options incorporating perspectives of a diverse group of stakeholders. These outputs reflect the diverse nature of challenges posed by zoonoses and should be acceptable across diseases, disciplines, and sectors. The identified research options capture the need for 'actionable research' for advancing the prevention and control of zoonoses in India.

Inflammatory Bowel Disease Telemedicine Clinical Trial: Impact of Educational Text Messages on Disease-Specific Knowledge Over 1 Year.

PubMed

Abutaleb, Ameer; Buchwald, Andrea; Chudy-Onwugaje, Kenechukwu; Langenberg, Patricia; Regueiro, Miguel; Schwartz, David A; Tracy, J Kathleen; Ghazi, Leyla; Patil, Seema A; Quezada, Sandra M; Russman, Katharine M; Quinn, Charlene C; Jambaulikar, Guruprasad; Beaulieu, Dawn B; Horst, Sara; Cross, Raymond K

2018-05-18

Effective treatments are available for patients with inflammatory bowel disease (IBD); however, suboptimal outcomes occur and are often linked to patients' limited disease knowledge. The aim of this analysis was to determine if delivery of educational messages through a telemedicine system improves IBD knowledge. TELEmedicine for Patients with IBD (TELE-IBD) was a randomized controlled trial with visits at baseline, 6 months, and 12 months; patient knowledge was a secondary aim of the study. Patients were randomized to receive TELE-IBD every other week (EOW), weekly (TELE-IBD W), or standard of care. Knowledge was assessed at each visit with the Crohn's and Colitis Knowledge (CCKNOW) survey. The primary outcome was change in CCKNOW score over 1 year compared between the TELE-IBD and control groups. This analysis included 219 participants. Participants in the TELE-IBD arms had a greater improvement in CCKNOW score compared with standard care (TELE-IBD EOW +2.4 vs standard care +1.8, P = 0.03; TELE-IBD W +2.0 vs standard care +1.8, P = 0.35). Participants with lower baseline CCKNOW scores had a greater change in their score over time (P < 0.01). However, after adjusting for race, site, and baseline knowledge, there was no difference in CCKNOW score change between the control and telemedicine arms. Telemedicine improves IBD-specific knowledge through text messaging, although the improvement is not additive with greater frequency of text messages. However, after adjustment for confounding variables, telemedicine is not superior to education given through standard visits at referral centers. Further research is needed to determine if revised systems with different modes of delivery and/or frequency of messages improve disease knowledge.

Mobile Edge Computing Empowers Internet of Things

NASA Astrophysics Data System (ADS)

Ansari, Nirwan; Sun, Xiang

In this paper, we propose a Mobile Edge Internet of Things (MEIoT) architecture by leveraging the fiber-wireless access technology, the cloudlet concept, and the software defined networking framework. The MEIoT architecture brings computing and storage resources close to Internet of Things (IoT) devices in order to speed up IoT data sharing and analytics. Specifically, the IoT devices (belonging to the same user) are associated to a specific proxy Virtual Machine (VM) in the nearby cloudlet. The proxy VM stores and analyzes the IoT data (generated by its IoT devices) in real-time. Moreover, we introduce the semantic and social IoT technology in the context of MEIoT to solve the interoperability and inefficient access control problem in the IoT system. In addition, we propose two dynamic proxy VM migration methods to minimize the end-to-end delay between proxy VMs and their IoT devices and to minimize the total on-grid energy consumption of the cloudlets, respectively. Performance of the proposed methods are validated via extensive simulations.

Investigating the association between medication adherence and health-related quality of life in COPD: Methodological challenges when using a proxy measure of adherence.

PubMed

Boland, Melinde R S; van Boven, Job F M; Kruis, Annemarije L; Chavannes, Niels H; van der Molen, Thys; Goossens, Lucas M A; Rutten-van Mölken, Maureen P M H

2016-01-01

The association between non-adherence to medication and health-related quality-of-life (HRQoL) in Chronic Obstructive Pulmonary Disease (COPD) remains poorly understood. Different ways to deal with methodological challenges to estimate this association have probably contributed to conflicting results. To investigate the association between medication adherence and HRQoL, thereby illustrating methodological challenges that need to be addressed. We used longitudinal patient-level data from a cluster-randomized controlled trial (i.e. RECODE) including three-year data on type and dose of COPD maintenance medication prescribed and HRQoL (Clinical COPD Questionnaire [CCQ], st. George Respiratory Questionnaire [SGRQ], EuroQol 5-dimensions [EQ-5D]) of 511 patients. A linear mixed model was used to assess the association between adherence and HRQoL using a fixed cut-off of 80% of the proportion of days covered (PDC) to define adherence. Subsequently, we investigated the impact of differences in disease severity; lifestyle; and reversed causality, representing the methodological challenges. Additionally, we investigated the impact of changing the definition of adherence. In unadjusted analyses, and analyses adjusting for demographic characteristics only, SGRQ score was worse in the adherent compared to the non-adherent group. This association disappeared when correcting for disease severity and/or lifestyle. A better SGRQ score was predictive of decreased adherence in the following year. However, accounting for the previous HRQoL did not result in positive associations between adherence and HRQoL. When defining four categories of adherence, patients with a PDC between 80 and 99% had a significantly worse SGRQ score compared to patients with a PDC <60%, even after correction for lifestyle. There was no significant association between adherence and CCQ or EQ-5D. This study showed persistent methodological challenges in the investigation of the effect of medication adherence on HRQoL in COPD. A positive association of adherence and HRQoL was not found, even after adjusting for lifestyle, disease severity, and previous HRQoL. Copyright © 2015. Published by Elsevier Ltd.

Effects of methylphenidate on quality of life in children with both developmental coordination disorder and ADHD.

PubMed

Flapper, Boudien C T; Schoemaker, Marina M

2008-04-01

Measurement of health-related quality of life (HRQOL) in attention-deficit-hyperactivity disorder (ADHD) gives a more complete picture of day-to-day functioning and treatment effects than behavioural rating alone. The aim of this pilot study was to investigate the impact of the combined diagnoses of developmental coordination disorder (DCD) and ADHD on HRQOL, and the effectiveness of methylphenidate (MPH) on HRQOL. HRQOL was established using the Dutch-Child-AZL-TNO-Quality-of-Life (DUX-25) and the TNO-AZL-Child-Quality-of-Life (TACQOL) questionnaires, completed by children and parents. HRQOL of these children was compared with that of 23 age- and sex-matched healthy controls. Twenty-three children (21 males, two females; mean age 8 y 6 mo, [SD 3 mo] range 7 y-10 y 8 mo) with ADHD/DCD entered a 4-week, open-label MPH study, after MPH-sensitivity was established, in a double-blind, placebo-controlled trial. In these children's self- and proxy reports, impact of both DCD and ADHD was reflected in lower general well-being (self and proxy report p=0.001) due to lower functioning in motor (selfp=0.026; proxy 0.001), autonomic (self p<0.001; proxy p=0.047), cognitive (self p=0.001; proxy p=0.01), and social (self and proxy p<0.001) domains. HRQOL scores improved in 18 children receiving MPH (p=0.001) versus controls. The ADHD /DCD group also demonstrated a significant improvement in ADHD symptoms (p<0.001) and motor functioning (p<0.001). Additional motor therapy will still be needed in about half of the children with ADHD/DCD receiving MPH, within multimodal treatment including educational and psychosocial assistance.

Evaluation of prenatal risk factors for prediction of outcome in right heart lesions: CVP score in fetal right heart defects.

PubMed

Neves, Ana Luisa; Mathias, Leigh; Wilhm, Marilyn; Leshko, Jennifer; Linask, Kersti K; Henriques-Coelho, Tiago; Areias, José C; Huhta, James C

2014-09-01

To determine the prenatal variables predicting the risk of perinatal death in congenital right heart defects. Retrospective analysis of 28 fetuses with right heart defects was performed. Logistic regression analyses were performed to obtain odds ratios (OR) for the relationship between the risk of death and echocardiographic parameters. The parameters that correlated with the outcome were incorporated in an attempt to devise a disease-specific cardiovascular profile score. Fetal echocardiograms (143) from 28 patients were analyzed. The cardiovascular profile score predicted the risk of death. A lower right ventricle (RV) pressure was associated with mortality (OR 0.959; 95% confidence intervals (CI) 0.940-0.978). Higher peak aortic velocity through the aortic valve (OR 0.104; 95% CI 0.020-0.529) was associated with a better outcome. These cardiac function parameters were incorporated in a modified disease-specific CVP Score. Patients with a mean modified cardiovascular profile score of ≤ 6 were over 3.7 times more likely to die than those with scores of 7-10. The original Cardiovascular Profile Score predicted the risk of death in right heart defects. The modified score was not validated as a good prediction tool by this study. Fetal RV pressure estimate and peak aortic velocity can be used as independent prognostic predictors.

Potential worldwide distribution of Fusarium dry root rot in common beans based on the optimal environment for disease occurrence.

PubMed

Macedo, Renan; Sales, Lilian Patrícia; Yoshida, Fernanda; Silva-Abud, Lidianne Lemes; Lobo, Murillo

2017-01-01

Root rots are a constraint for staple food crops and a long-lasting food security problem worldwide. In common beans, yield losses originating from root damage are frequently attributed to dry root rot, a disease caused by the Fusarium solani species complex. The aim of this study was to model the current potential distribution of common bean dry root rot on a global scale and to project changes based on future expectations of climate change. Our approach used a spatial proxy of the field disease occurrence, instead of solely the pathogen distribution. We modeled the pathogen environmental requirements in locations where in-situ inoculum density seems ideal for disease manifestation. A dataset of 2,311 soil samples from commercial farms assessed from 2002 to 2015 allowed us to evaluate the environmental conditions associated with the pathogen's optimum inoculum density for disease occurrence, using a lower threshold as a spatial proxy. We encompassed not only the optimal conditions for disease occurrence but also the optimal pathogen's density required for host infection. An intermediate inoculum density of the pathogen was the best disease proxy, suggesting density-dependent mechanisms on host infection. We found a strong convergence on the environmental requirements of both the host and the disease development in tropical areas, mostly in Brazil, Central America, and African countries. Precipitation and temperature variables were important for explaining the disease occurrence (from 17.63% to 43.84%). Climate change will probably move the disease toward cooler regions, which in Brazil are more representative of small-scale farming, although an overall shrink in total area (from 48% to 49% in 2050 and 26% to 41% in 2070) was also predicted. Understanding pathogen distribution and disease risks in an evolutionary context will therefore support breeding for resistance programs and strategies for dry root rot management in common beans.

Potential worldwide distribution of Fusarium dry root rot in common beans based on the optimal environment for disease occurrence

PubMed Central

Macedo, Renan; Sales, Lilian Patrícia; Yoshida, Fernanda; Silva-Abud, Lidianne Lemes

2017-01-01

Root rots are a constraint for staple food crops and a long-lasting food security problem worldwide. In common beans, yield losses originating from root damage are frequently attributed to dry root rot, a disease caused by the Fusarium solani species complex. The aim of this study was to model the current potential distribution of common bean dry root rot on a global scale and to project changes based on future expectations of climate change. Our approach used a spatial proxy of the field disease occurrence, instead of solely the pathogen distribution. We modeled the pathogen environmental requirements in locations where in-situ inoculum density seems ideal for disease manifestation. A dataset of 2,311 soil samples from commercial farms assessed from 2002 to 2015 allowed us to evaluate the environmental conditions associated with the pathogen’s optimum inoculum density for disease occurrence, using a lower threshold as a spatial proxy. We encompassed not only the optimal conditions for disease occurrence but also the optimal pathogen’s density required for host infection. An intermediate inoculum density of the pathogen was the best disease proxy, suggesting density-dependent mechanisms on host infection. We found a strong convergence on the environmental requirements of both the host and the disease development in tropical areas, mostly in Brazil, Central America, and African countries. Precipitation and temperature variables were important for explaining the disease occurrence (from 17.63% to 43.84%). Climate change will probably move the disease toward cooler regions, which in Brazil are more representative of small-scale farming, although an overall shrink in total area (from 48% to 49% in 2050 and 26% to 41% in 2070) was also predicted. Understanding pathogen distribution and disease risks in an evolutionary context will therefore support breeding for resistance programs and strategies for dry root rot management in common beans. PMID:29107985

Prevalence and determinants of misreporting among European children in proxy-reported 24 h dietary recalls.

PubMed

Börnhorst, C; Huybrechts, I; Ahrens, W; Eiben, G; Michels, N; Pala, V; Molnár, D; Russo, P; Barba, G; Bel-Serrat, S; Moreno, L A; Papoutsou, S; Veidebaum, T; Loit, H-M; Lissner, L; Pigeot, I

2013-04-14

Dietary assessment is strongly affected by misreporting (both under- and over-reporting), which results in measurement error. Knowledge about misreporting is essential to correctly interpret potentially biased associations between diet and health outcomes. In young children, dietary data mainly rely on proxy respondents but little is known about determinants of misreporting here. The present analysis was conducted within the framework of the multi-centre IDEFICS (Identification and prevention of dietary- and lifestyle-induced health effects in children and infants) study and is based on 6101 children aged 2-9 years with 24 h dietary recall (24-HDR) and complete covariate information. Adapted Goldberg cut-offs were applied to classify the 24-HDR as 'over-report', 'plausible report' or 'under-report'. Backward elimination in the course of multi-level logistic regression analyses was conducted to identify factors significantly related to under- and over-reporting. Next to characteristics of the children and parents, social factors and parental concerns/perceptions concerning their child's weight status were considered. Further selective misreporting was addressed, investigating food group intakes commonly perceived as more or less socially desirable. Proportions of under-, plausible and over-reports were 8.0, 88.6 and 3.4 %, respectively. The risk of under-reporting increased with age (OR 1.19, 95 % CI 1.05, 1.83), BMI z-score of the child (OR 1.23, 95 % CI 1.10, 1.37) and household size (OR 1.12, 95 % CI 1.01, 1.25), and was higher in low/medium income groups (OR 1.45, 95 % CI 1.13, 1.86). Over-reporting was negatively associated with BMI z-scores of the child (OR 0.78, 95 % CI 0.69, 0.88) and higher in girls (OR 1.70, 95 % CI 1.27, 2.28). Further social desirability and parental concerns/perceptions seemed to influence the reporting behaviour. Future studies should involve these determinants of misreporting when investigating diet-disease relationships in children to correct for the differential reporting bias.

An acute cough-specific quality-of-life questionnaire for children: Development and validation.

PubMed

Anderson-James, Sophie; Newcombe, Peter A; Marchant, Julie M; O'Grady, Kerry-Ann F; Acworth, Jason P; Stone, D Grant; Turner, Catherine T; Chang, Anne B

2015-05-01

Patient-relevant outcome measures are essential for high-quality clinical research, and quality-of-life (QoL) tools are the current standard. Currently, there is no validated children's acute cough-specific QoL questionnaire. The objective of this study was to develop and validate the Parent-proxy Children's Acute Cough-specific QoL Questionnaire (PAC-QoL). Using focus groups, a 48-item PAC-QoL questionnaire was developed and later reduced to 16 items by using the clinical impact method. Parents of children with a current acute cough (<2 weeks) at enrollment completed 2 validated cough score measures, the preliminary 48-item PAC-QoL, and 3 other questionnaires (the State Trait Anxiety Inventory [STAI], the Short-Form 8-item 24-hour recall Health Survey [SF-8], and the Depression, Anxiety, and Stress 21-item Scale [DASS21]). All measures were repeated on days 3 and 14. The median age of the 155 children enrolled was 2.3 years (interquartile range, 1.3-4.6). Median cough duration at enrollment was 3 days (interquartile range, 2-5). The reduced 16-item scale had high internal consistency (Cronbach α = 0.95). Evidence for repeatability and criterion validity was shown by significant correlations between the domains and total PAC-QoL scores and the SF-8 (r = -0.36 and -0.51), STAI (r = -0.27 and -0.39), and DASS21 (r = -0.32 and -0.41) scales on days 0 and 3, respectively. The final PAC-QoL questionnaire was sensitive to change over time, with changes significantly relating to changes in cough score measures (P < .001). The 16-item PAC-QoL is a reliable and valid outcome measure that assesses QoL related to childhood acute cough at a given time point and reflects changes in acute cough-specific QoL over time. Copyright © 2014 American Academy of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

Disease-specific self-efficacy in spasmodic dysphonia patients.

PubMed

Hu, Amanda; Isetti, Derek; Hillel, Allen D; Waugh, Patricia; Comstock, Bryan; Meyer, Tanya K

2013-03-01

Self-efficacy (SE) is an optimistic self-belief that one can perform a novel task. This concept involves empowerment, self-esteem, and adaptation to a stressful situation. SE is a strong predictor of health behaviors. Our objectives were to study SE in spasmodic dysphonia (SD) and to develop a disease-specific SE-SD scale. Prospective study. Academic hospital. Disease-specific SE-SD items were developed with laryngologists, speech pathologists, and SD patients. These items, General SE Scale, Voice Handicap Index-10 (VHI-10), Consensus Auditory Perceptual Evaluation of Voice (CAPE-V), and Hospital Anxiety and Depression Scale (HADS), were administered to SD patients who presented for botulinum toxin injections. One hundred forty-five SD patients (mean age 59.5 ± 13.6 years) had a general SE score (Cronbach's α = 0.894) of 33.4 ± 5.2 out of 40. This was negatively correlated with HADS-A (r = -0.42, P < 0.001) and HADS-D (r = -0.42, P < .001), but not correlated with VHI-10 (r = -0.098, P = .243) and CAPE-V (r = -0.047, P = .57). Factor analysis selected 8 items from the general SE scale and 5 disease-specific SE-SD items to generate a 13-item disease-specific SE-SD scale (Cronbach's α = 0.907). Disease-specific SE-SD score was 42.1 ± 6.9 out of 52 and was negatively correlated with VHI-10 (r = -0.19, P = .005), HADS-A (r = -0.43, P < .001), and HADS-D (r = -0.57, P < .001), but not correlated with CAPE-V (r = -0.024, P = .60). SD patients established on botulinum toxin injections have high degrees of general and disease-specific SE. Patients with higher SE-SD demonstrate lower vocal handicap and lower levels of anxiety and depression. A 13-item disease-specific SE-SD scale has been developed.

Attention Deficit Hyperactivity Disorder Subtypes and Symptom Response in Adults Treated with Lisdexamfetamine Dimesylate

PubMed Central

Mattingly, Greg; Weisler, Richard; Dirks, Bryan; Babcock, Thomas; Adeyi, Ben; Scheckner, Brian; Lasser, Robert

2012-01-01

Objective: To evaluate the efficacy of lisdexamfetamine dimesylate in adults with attention deficit hyperactivity disorder symptom subtypes who exhibit predominantly inattention, hyperactivity/ impulsivity, or combined symptom clusters. Design/Setting/Participants: This is a post-hoc analysis from a multicenter, one-year, open-label lisdexamfetamine dimesylate study in adults with attention deficit hyperactivity disorder previously completing two weeks or more in a four-week, randomized, placebo-controlled lisdexamfetamine dimesylate study, using Attention Deficit Hyperactivity Disorder Rating Scale IV symptom ratings as an attention deficit hyperactivity disorder subtype proxy (N=349). Measurements: Attention Deficit Hyperactivity Disorder Rating Scale IV was measured at baseline of prior study and throughout the open-label study. Proxy subtypes were based on item scores of 2 (moderate) or 3 (severe), representing endorsement of at least six of nine symptoms on respective subscales; predominantly combined type endorsed at least six of nine symptoms on each subscale. Overall safety evaluations included treatment-emergent adverse events. Results: At baseline, 93 of 345 participants exhibited predominantly inattention, 13 predominantly hyperactivity/ impulsivity, 236 combined symptom clusters, and three were unassigned. For the three subgroups, respectively, mean (standard deviation) Attention Deficit Hyperactivity Disorder Rating Scale IV total scores at baseline were 34.5 (4.02), 33.8 (3.27), and 43.6 (5.24); change from baseline to endpoint scores were -19.3 (9.48), -24.0 (7.22), and -27.3 (11.78). Mean (standard deviation) end-of-study lisdexamfetamine dimesylate dose was 57.7 (14.75), 53.1 (16.01), and 56.9 (14.94)mg/day, respectively. Treatment-emergent adverse events (>5%) were upper respiratory tract infection (21.8%), insomnia (19.5%), headache (17.2%), dry mouth (16.6%), decreased appetite (14.3%), irritability (11.2%), anxiety (8.3%), nasopharyngitis (7.4%), sinusitis (6.6%), decreased weight (6.0%), back pain (5.4%), and muscle spasms (5.2%). Conclusions: Lisdexamfetamine dimesylate was effective in participants with predominantly inattention, hyperactivity/ impulsivity, and combined attention deficit hyperactivity disorder symptom clusters. Groups exhibiting specific predominant subtype symptoms did not differ in clinical response to lisdexamfetamine dimesylate. PMID:22808446

Assessing the Effects of Teachers' Reading Knowledge on Students' Achievement Using Multilevel Propensity Score Stratification

ERIC Educational Resources Information Center

Kelcey, Ben

2011-01-01

This study investigated the relationship of teachers' reading knowledge with students' reading achievement using a direct teacher knowledge assessment rather than indirect proxies (e.g., certification). To address the inequitable distribution of teachers' knowledge resulting from differences in teachers' backgrounds and the disparities in how…

Discrepancies between modified Medical Research Council dyspnea score and COPD assessment test score in patients with COPD

PubMed Central

Rhee, Chin Kook; Kim, Jin Woo; Hwang, Yong Il; Lee, Jin Hwa; Jung, Ki-Suck; Lee, Myung Goo; Yoo, Kwang Ha; Lee, Sang Haak; Shin, Kyeong-Cheol; Yoon, Hyoung Kyu

2015-01-01

Background and objective According to the Global Initiative for Chronic Obstructive Lung Disease (GOLD) guidelines, either a modified Medical Research Council (mMRC) dyspnea score of ≥2 or a chronic obstructive pulmonary disease (COPD) assessment test (CAT) score of ≥10 is considered to represent COPD patients who are more symptomatic. We aimed to identify the ideal CAT score that exhibits minimal discrepancy with the mMRC score. Methods A receiver operating characteristic curve of the CAT score was generated for an mMRC scores of 1 and 2. A concordance analysis was applied to quantify the association between the frequencies of patients categorized into GOLD groups A–D using symptom cutoff points. A κ-coefficient was calculated. Results For an mMRC score of 2, a CAT score of 15 showed the maximum value of Youden’s index with a sensitivity and specificity of 0.70 and 0.66, respectively (area under the receiver operating characteristic curve [AUC] 0.74; 95% confidence interval [CI], 0.70–0.77). For an mMRC score of 1, a CAT score of 10 showed the maximum value of Youden’s index with a sensitivity and specificity of 0.77 and 0.65, respectively (AUC 0.77; 95% CI, 0.72–0.83). The κ value for concordance was highest between an mMRC score of 1 and a CAT score of 10 (0.66), followed by an mMRC score of 2 and a CAT score of 15 (0.56), an mMRC score of 2 and a CAT score of 10 (0.47), and an mMRC score of 1 and a CAT score of 15 (0.43). Conclusion A CAT score of 10 was most concordant with an mMRC score of 1 when classifying patients with COPD into GOLD groups A–D. However, a discrepancy remains between the CAT and mMRC scoring systems. PMID:26316736

Development of the outcome expectancy scale for self-care among periodontal disease patients.

PubMed

Kakudate, Naoki; Morita, Manabu; Fukuhara, Shunichi; Sugai, Makoto; Nagayama, Masato; Isogai, Emiko; Kawanami, Masamitsu; Chiba, Itsuo

2011-12-01

The theory of self-efficacy states that specific efficacy expectations affect behaviour. Two types of efficacy expectations are described within the theory. Self-efficacy expectations are the beliefs in the capacity to perform a specific behaviour. Outcome expectations are the beliefs that carrying out a specific behaviour will lead to a desired outcome. To develop and examine the reliability and validity of an outcome expectancy scale for self-care (OESS) among periodontal disease patients. A 34-item scale was tested on 101 patients at a dental clinic. Accuracy was improved by item analysis, and internal consistency and test-retest stability were investigated. Concurrent validity was tested by examining associations of the OESS score with the self-efficacy scale for self-care (SESS) score and plaque index score. Construct validity was examined by comparing OESS scores between periodontal patients at initial visit (group 1) and those continuing maintenance care (group 2). Item analysis identified 13 items for the OESS. Factor analysis extracted three factors: social-, oral- and self-evaluative outcome expectancy. Cronbach's alpha coefficient for the OESS was 0.90. A significant association was observed between test and retest scores, and between the OESS and SESS and plaque index scores. Further, group 2 had a significantly higher mean OESS score than group 1. We developed a 13-item OESS with high reliability and validity which may be used to assess outcome expectancy for self-care. A patient's psychological condition with regard to behaviour and affective status can be accurately evaluated using the OESS with SESS. © 2011 Blackwell Publishing Ltd.

Disparity between ultrasound and clinical findings in psoriatic arthritis.

PubMed

Husic, Rusmir; Gretler, Judith; Felber, Anja; Graninger, Winfried B; Duftner, Christina; Hermann, Josef; Dejaco, Christian

2014-08-01

To investigate the association between psoriatic arthritis (PsA)-specific clinical composite scores and ultrasound-verified pathology as well as comparison of clinical and ultrasound definitions of remission. We performed a prospective study on 70 consecutive PsA patients. Clinical assessments included components of Disease Activity Index for Psoriatic Arthritis (DAPSA) and the Composite Psoriatic Disease Activity Index (CPDAI). Minimal disease activity (MDA) and the following remission criteria were applied: CPDAI joint, entheses and dactylitis domains (CPDAI-JED)=0, DAPSA≤3.3, Boolean's remission definition and physician-judged remission (rem-phys). B-mode and power Doppler (PD-) ultrasound findings were semiquantitatively scored at 68 joints (evaluating synovia, peritendinous tissue, tendons and bony changes) and 14 entheses. Ultrasound remission and minimal ultrasound disease activity (MUDA) were defined as PD-score=0 and PD-score ≤1, respectively, at joints, peritendinous tissue, tendons and entheses. DAPSA but not CPDAI correlated with B-mode and PD-synovitis. Ultrasound signs of enthesitis, dactylitis, tenosynovitis and perisynovitis were not linked with clinical composites. Clinical remission or MDA was observed in 15.7% to 47.1% of PsA patients. Ultrasound remission and MUDA were present in 4.3% and 20.0% of patients, respectively. Joint and tendon-related PD-scores were higher in patients with active versus inactive disease according to CPDAI-JED, DAPSA, Boolean's and rem-phys, whereas no difference was observed regarding enthesitis and perisynovitis. DAPSA≤3.3 (OR 3.9, p=0.049) and Boolean's definition (OR 4.6, p=0.03) were more useful to predict MUDA than other remission criteria. PsA-specific composite scores partially reflect ultrasound findings. DAPSA and Boolean's remission definitions better identify MUDA patients than other clinical criteria. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Spirituality and quality of life in low-income men with metastatic prostate cancer.

PubMed

Zavala, Mary Wassel; Maliski, Sally L; Kwan, Lorna; Fink, Arlene; Litwin, Mark S

2009-07-01

To determine how spirituality is associated with health-related quality of life (HRQOL) in an ethnically diverse cohort of low-income men with metastatic prostate cancer. Eighty-six participants in a state-funded program that provides free prostate cancer treatment to uninsured, low-income men completed written surveys and telephone interviews containing validated measures of spirituality, and general and disease-specific HRQOL. Assessments were made following diagnosis of metastatic disease. We used multivariate analyses to assess the effect of spirituality and its two subscales, faith and meaning/peace, on HRQOL. African American and Latino men, and men with less than a high-school education had the highest spirituality scores. Spirituality was significantly associated with general and disease-specific HRQOL. We also found a significant interaction between faith and meaning/peace in the physical and pain domains. Greater spirituality was associated with better HRQOL and psychosocial function. Meaning/peace closely tracks with HRQOL. Higher faith scores, in the absence of high meaning/peace scores, are negatively associated with HRQOL. (c) 2008 John Wiley & Sons, Ltd.

Finger taps and constipation are closely related to symptoms of overactive bladder in male patients with Parkinson's disease.

PubMed

Tsujimura, Akira; Yamamoto, Yoichi; Sakoda, Saburo; Okuda, Hidenobu; Yamamoto, Keisuke; Fukuhara, Shinichiro; Yoshioka, Iwao; Kiuchi, Hiroshi; Takao, Tetsuya; Miyagawa, Yasushi; Nonomura, Norio

2014-01-01

To assess which motor and non-motor symptoms are closely related to overactive bladder severity in male patients with Parkinson's disease. A total of 160 male patients (mean age 71.4 ± 8.2 years) diagnosed with Parkinson's disease were included in the present study at Osaka University and affiliated hospitals. The severity of Parkinson's disease was classified as stage 3, 4 or 5 based on the Hoehn and Yahr staging system. Disease duration was 8.9 ± 5.1 years. Age, seven items from the Unified Parkinson's Disease Rating Scale motor section part III and three non-motor symptoms were assessed by multivariate analysis for their impact on the overactive bladder symptom score, a specific questionnaire for overactive bladder. Overactive bladder symptom score was significantly higher in the group with severe motor symptoms related to finger taps and gait than in the group with mild motor symptoms related to these two factors. Furthermore, overactive bladder symptom score of patients with erectile dysfunction and constipation was significantly higher than that in patients without these symptoms. Multivariate analysis identified only finger taps and constipation as factors independently associated with overactive bladder symptom score. Although a study on a larger scale is required to further assess the association of Parkinson's disease symptoms with overactive bladder symptom score, information on finger taps and severity of constipation should be obtained when assessing urological patients with Parkinson's disease. © 2013 The Japanese Urological Association.

[Correlation between the SF-8 health status questionnaire and JRQLQ in patients with Japanese cedar pollinosis].

PubMed

Fujii, Tsukasa; Ogino, Satoshi; Arimoto, Hiroe; Irifune, Morihiro; Iwata, Nobuko; Ookawachi, Ichiro; Kikumori, Hiroshi; Seo, Ritsu; Takeda, Mariko; Tamaki, Akiko; Baba, Kenji; Nose, Michihiro

2007-02-01

It is reported that the health-related quality of life (HRQL) is an important outcome in the Japanese Cedar Pollinosis (JCP) treatment. In Japan, the disease-specific Japan Rhino-conjunctivitis Quality of Life Questionnaire (JRQLQ) and the generic SF-36 Health Survey (SF-36) has been used. The aim of this study is to investigate more profitable QOL by using both the disease-specific questionnaire and the non-disease-specific questionnaire together. 411 patients with JCP who visited 10 ENT clinics in Osaka from March 14 to March 26 (peak pollen season) in 2005 were questioned, and 240 patients were engaged in this study as subjects. In this study, the QOL scores were evaluated using the JRQLQ and SF-8 Health Survey (Japanese Version), a new, even shorter generic health survey. Using factor analysis and the correlation matrix, we showed that the disease-specific and the general health instrument covered a different half the total measurable HRQL. There was some correlation between the SF-8 items with the JRQLQ domains. There was little correlation between the SF-8 items and symptom scores, while, there was high correlation between the JRQLQ and symptom scores. The "Usual daily activities" domain in the JRQLQ correlated with any rhinoconjunctivitis symptoms. Both JRQLQ and SF-8 can be used to assess the quality of life of patients with JCP. Each instrument measures the aspects of the HRQL that hardly overlaps. For an assessment of the HRQL in JCP that is complete and responsive both instruments should be employed together.

The Role of eIF4E Activity in Breast Cancer

DTIC Science & Technology

2010-08-01

marker with some success. Furthermore, eIF4E is an established target for cancer therapy [3] and clinical trials of the efficacy and safety of cancer...individual group was small, for overall survival (OS), disease-free survival (DFS) and disease- specific survival ( DSS ) (Figure 2). High eIF4E scores were...indicative of poor prognosis. Prognosis seemed to worsen with each increasing eIF4E score for OS, whereas patterns for DFS and DSS sug- gested weaker

Routine behavioral and mental health screening in young children with type 1 diabetes mellitus.

PubMed

Zenlea, Ian Spencer; Mednick, Lauren; Rein, Jennifer; Quinn, Maryanne; Wolfsdorf, Joseph; Rhodes, Erinn T

2014-08-01

The American Diabetes Association and International Society for Pediatric and Adolescent Diabetes recommend that providers of diabetes care receive training in the recognition of psychosocial problems related to diabetes. To report the results of routine behavioral/mental health screening for children with type 1 diabetes mellitus (T1D) seen in a multidisciplinary pediatric diabetes program. This was a cross-sectional study of children with T1D ages 4-11 years, who underwent behavioral/mental health screening as part of their diabetes care. Screening utilized the Strengths and Difficulties Questionnaire (SDQ) Parent Proxy Version, and scores were reviewed by a social worker. SDQ scale and total difficulties scores were compared by gender, visit type, age, T1D duration, and HbA1c. Scores were also compared to age-appropriate normative data for children in United States of America (US). SDQ Parent Proxy Version total difficulties and scale scores did not differ by patient or visit characteristics. Compared with normative data for US children, a greater proportion of children with T1D ages 4-7 and 8-10 years had borderline/abnormal scores on the emotional symptoms scale (p = 0.01 and p = 0.03, respectively), suggesting risk for psychological disorders, such as anxiety and depression. Our findings suggest that children less than 11 years old with T1D may have greater emotional symptoms as compared to their age-matched healthy peers. Pediatric diabetes care providers, with access to mental health services, should consider incorporating routine behavioral/mental health screening for children less than 12 years old in their practice. © 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Childhood obesity, self-esteem and health-related quality of life among urban primary schools children in Kuching, Sarawak, Malaysia.

PubMed

Lee, P Y; Cheah, W l; Chang, C T; Siti Raudzah, G

2012-08-01

There is limited data on childhood obesity and its impact on children from diverse cultural backgrounds. This study is aimed at determining the association between obesity, self-esteem and health-related quality of life (HRQOL) among Malaysian urban primary school children of different ethnicity. A cross-sectional study was conducted involving 311 children aged 11-13 years from primary schools in Kuching, Sarawak. Self-esteem and health-related quality of life (HRQOL) were measured using the Lawrence Self-esteem Questionnaire (LAWSEQ) questionnaire and the Paediatric Quality of Life Inventory (PedsQL), respectively. Body weight and height were taken and body mass index for age calculated. The prevalence of overweight and obesity among the children were 18.2% and 15.2% respectively. Parent-proxy and child self-reported PedsQL scores were higher for normal weight children compared to thin and obese children, but lower than overweight children. At the subscale level, only parent-proxy PedsQL scores in psychosocial health and emotional component were significantly different between overweight and obese children (p=0.019, p=0.02). The Self-esteem score was significantly correlated with parent and child PedsQL scores. Although obesity was associated with lower HRQOL among children, both parent and child PedsQL scores among the overweight group were higher than that for the normal weight group. Overweight and obesity did affect quality of life and self-esteem of children in this study, particularly in the areas of psychosocial and emotional health. Policy makers and programme managers should take into consideration the impact of obesity on children and parents in designing intervention programmes.

Subjective Fatigue in Children with Hearing Loss Assessed Using Self- and Parent-Proxy Report

ERIC Educational Resources Information Center

Hornsby, Benjamin W. Y.; Gustafson, Samantha J.; Lancaster, Hope; Cho, Sun-Joo; Camarata, Stephen; Bess, Fred H.

2017-01-01

Purpose: The primary purposes of this study were to examine the effects of hearing loss and respondent type (self- vs. parent-proxy report) on subjective fatigue in children. We also examined associations between child-specific factors and fatigue ratings. Method: Subjective fatigue was assessed using the Pediatric Quality of Life Inventory…

Quality of life in children with non-cystic-fibrosis bronchiectasis.

PubMed

Gokdemir, Yasemin; Hamzah, Ameer; Erdem, Ela; Cimsit, Cagatay; Ersu, Refika; Karakoc, Fazilet; Karadag, Bulent

2014-01-01

Non-cystic-fibrosis bronchiectasis (non-CF BE) continues to be a problem in developing countries and it is therefore important to examine and assess this disease. The aims of this prospective study were to evaluate the health-related quality of life (HRQOL) in non-CF BE children and also to assess the risk factors associated with HRQOL. Forty-two non-CF BE patients between the ages of 9 and 18 years were enrolled in the study. All recruited patients completed the generic Short-Form-36 (SF-36), the St. George's Respiratory Questionnaire (SGRQ) for disease-specific QOL scale and forms on socioeconomic status (SES). The extent and severity of CT abnormalities were evaluated by using the modified Bhalla scoring system. Association between HRQOL questionnaires and demographic variables, pulmonary function test, high-resolution CT scores and SES were evaluated. SF-36 and SGRQ subscales all correlated inversely with each other (SF-36 physical component summary with SGRQ symptoms score: r = -0.466, p = 0.001, activity score: r = -0.666, p = 0.000 and impact score: r = -0.667, p = 0.000. SF-36 mental component summary with SGRQ symptoms score: r = -0.396, p = 0.005, activity score: r = -0.533, p = 0.000 and impact score: r = -0.512, p = 0.000). There was an inverse correlation between SGRQ symptoms scores and the duration of regular follow-up (r = -0.3, p = 0.04). The symptoms subscale of SGRQ correlated positively with low values for pulmonary function testing (r = -0.417, p = 0.003) and frequent antibiotic requirements (r = 0.303, p = 0.035). Early diagnosis and regular follow-up of children with non-CF BE is important for improving their QOL. As expected, the severity and frequency of symptoms are inversely related to the pulmonary function and the QOL scores. A disease-specific questionnaire should be developed to monitor QOL in children with non-CF BE. © 2014 S. Karger AG, Basel

Patterns of clinical nail appearances in patients with cutaneous psoriasis

PubMed Central

MARINA, ELENA MIHAELA; BOTAR-JID, CAROLINA; BOLBOACA, SORANA DANIELA; ROMAN, IULIA IOANA; SENILA, CORINA SIMONA; MIHU, CARMEN MIHAELA; TATARU, DUMITRU ALEXANDRU

2017-01-01

Background and aim Nail manifestations are often an overlooked aspect in psoriatic disease, cutaneous and joint involvement being far more often reported and investigated. The reported prevalence of nail changes varies in literature, specific fingernail clinical features having different degrees of occurrence. The aim of this study was to describe specific clinical patterns of fingernail alterations in adult patients with plaque-type psoriasis in a university hospital in the North-West of Romania. Methods Clinical data of 35 patients with fingernail psoriasis were collected and analyzed. Psoriasis Area and Severity Index (PASI) and Nail Psoriasis Severity Index (NAPSI) scores were used to quantify disease extension in each patient. Results PASI score proved linearly correlated with NAPSI score (p<0.05). The age of onset of fingernail psoriasis was positively correlated with age of onset cutaneous psoriasis (p<0.0001). Furthermore, the duration of cutaneous involvement and NAPSI proved significantly related (p<0.05). The third fingernail in the right hand and first fingernail in the left hand were in most of the cases severely affected. The most common observed nail pattern was pitting, followed by salmon patches and subungual hyperkeratosis. Conclusion Important nail changes appear even in moderate forms of cutaneous psoriasis. Particular localization of specific fingernail psoriasis pattern enables the possibility of detecting early stage disease. PMID:28246493

Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy, and health care professional-proxy reports.

PubMed

Constantinou, Christina; Payne, Nicola; Inusa, Baba

2015-05-01

The quality of life (QoL) of children with sickle cell anaemia (SCA) in the United Kingdom has not been examined, and a discrepancy measure based on Gap theory has rarely been used. This study investigated whether (1) child self-reports of QoL using a discrepancy measure (the Generic Children's QoL Measure; GCQ) are lower than those from healthy children, (2) proxy reports from parents and health care professionals are lower than child self-reports, and (3) demographic and disease severity indicators are related to QoL. An interdependent groups, cross-sectional design was implemented. Seventy-four children with SCA, their parent, and members of their health care team completed the GCQ. Demographic and disease severity indicators were recorded. GCQ data from healthy children were obtained from the UK Data Archive. Contrary to past research, when examining generic discrepancy QoL, children with SCA did not report a lower QoL than healthy children, and parent- and health care professional-proxy reports were not lower than child self-reports. Few of the demographic and disease severity indicators were related to QoL. Proxy reports may be used to gain a more complete picture of QoL, but should not be a substitute for self-reports. The explanation for the relatively high levels of QoL reported is not clear, but children with SCA may have realistic expectations about their ideal-self, place greater emphasis on aspects other than health in shaping their QoL, and define achievements within the limits of their illness. Future research should focus on psychological factors in explaining QoL. Statement of contribution What is already known on this subject? Children with sickle cell disease (SCD) generally have a reduced QoL compared with healthy children, but there appears to be no research measuring QoL in paediatric SCD in the United Kingdom. Proxy QoL reports from parents are often lower than child self-reports, but there is less research examining proxy reports from health care professionals. Previous research has measured paediatric QoL using measures of current health-related QoL, but this is not in line with the WHO's definition of QoL as the discrepancy between current state and expectations. What does this study add? Children with Sickle cell anaemia do not have an impaired discrepancy QoL; they may have realistic expectations about their ideal-self and define achievements within the limits of their illness. Health care professionals are able to gauge a SCA child's discrepancy QoL better than parents. The GCQ (a generic discrepancy measure of QoL) takes into account expectations about ideal QoL and does not emphasize health; it may be of use to Psychologists working with SCA children. © 2014 The British Psychological Society.

Predictors of Olfactory Dysfunction in Rhinosinusitis Using the Brief Smell Identification Test

PubMed Central

Alt, Jeremiah A.; Mace, Jess C.; Buniel, Maria C. F.; Soler, Zachary M.; Smith, Timothy L.

2014-01-01

Objective Associations between olfactory function to quality-of-life (QOL) and disease severity in patients with rhinosinusitis is poorly understood. We sought to evaluate and compare olfactory function between subgroups of patients with rhinosinusitis using the Brief Smell Identification Test (BSIT). Study Design Cross-sectional evaluation of a multi-center cohort. Methods Patients with recurrent acute sinusitis (RARS) and chronic rhinosinusitis (CRS) with and without nasal polyposis were prospectively enrolled from three academic tertiary care sites. Each subject completed the BSIT, in addition to measures of disease-specific QOL. Patient demographics, comorbidities, and clinical measures of disease severity were compared between patients with normal (BSIT; ≥9) and abnormal (BSIT; <9) olfaction scores. Regression modeling was used to identify potential risk factors associated with olfactory impairment. Results Patients with rhinosinusitis (n=445) were found to suffer olfactory dysfunction as measured by the BSIT (28.3%). Subgroups of rhinosinusitis differed in the degree of olfactory dysfunction reported. Worse disease severity, measured by computed tomography and nasal endoscopy, correlated to worse olfaction. Olfactory scores did not consistently correlate with Rhinosinusitis Disability Index or Sinonasal Outcome Test scores. Regression models demonstrated nasal polyposis was the strongest predictor of olfactory dysfunction. Recalcitrant disease and aspirin intolerance were strongly predictive of worse olfactory function. Conclusion Olfactory dysfunction is a complex, multi-factorial process found to be differentially expressed within subgroups of rhinosinusitis. Olfaction was associated with disease severity as measured by imaging and endoscopy, with only weak associations to disease-specific QOL measures. PMID:24402746

Genetic polymorphisms of vitamin D receptor (VDR) in Fabry disease.

PubMed

Teitcher, Michael; Weinerman, Sarah; Whybra, Catharina; Beck, Michael; Sharon, Nir; Elstein, Deborah; Altarescu, Gheona

2008-11-01

Fabry disease, an X-linked inborn error of metabolism, is characterized by multi-organ involvement including cardiac signs of left ventricular hypertrophy and abnormal intima-medial (IMT) thickening of arteries, progressive renal failure, neurological involvement, and more. The vitamin D receptor (VDR) and an enzyme producing vitamin D3 result in an autocrine loop with direct effects on blood vessels. The purpose of this study is to assess VDR polymorphisms (BsmI, FokI, ApaI, and TaqI) relative to clinically important disease parameters using a disease-specific severity score (MSSI) and haplotype analysis. There were statistically significant differences between females (43% of 74 patients) and males in MSSI total scores, and in general and neurologic sub-scores. There appears to be a protective effect of the TaqI tt genotype so that there were significantly lower scores in clinical categories between those with the tt genotype versus those with the TT genotype. Multivariate models of haplotypes with MSSI scores reveal that T-A-f-B and t-a-F-b haplotypes of the VDR gene polymorphisms are significantly associated with variation in the Fabry phenotype. Despite the limitations of using the MSSI score as a clinical correlate, these results are provocative and further studies in larger cohorts with more males are recommended.

On the Use of Human Mobility Proxies for Modeling Epidemics

PubMed Central

Tizzoni, Michele; Bajardi, Paolo; Decuyper, Adeline; Kon Kam King, Guillaume; Schneider, Christian M.; Blondel, Vincent; Smoreda, Zbigniew; González, Marta C.; Colizza, Vittoria

2014-01-01

Human mobility is a key component of large-scale spatial-transmission models of infectious diseases. Correctly modeling and quantifying human mobility is critical for improving epidemic control, but may be hindered by data incompleteness or unavailability. Here we explore the opportunity of using proxies for individual mobility to describe commuting flows and predict the diffusion of an influenza-like-illness epidemic. We consider three European countries and the corresponding commuting networks at different resolution scales, obtained from (i) official census surveys, (ii) proxy mobility data extracted from mobile phone call records, and (iii) the radiation model calibrated with census data. Metapopulation models defined on these countries and integrating the different mobility layers are compared in terms of epidemic observables. We show that commuting networks from mobile phone data capture the empirical commuting patterns well, accounting for more than 87% of the total fluxes. The distributions of commuting fluxes per link from mobile phones and census sources are similar and highly correlated, however a systematic overestimation of commuting traffic in the mobile phone data is observed. This leads to epidemics that spread faster than on census commuting networks, once the mobile phone commuting network is considered in the epidemic model, however preserving to a high degree the order of infection of newly affected locations. Proxies' calibration affects the arrival times' agreement across different models, and the observed topological and traffic discrepancies among mobility sources alter the resulting epidemic invasion patterns. Results also suggest that proxies perform differently in approximating commuting patterns for disease spread at different resolution scales, with the radiation model showing higher accuracy than mobile phone data when the seed is central in the network, the opposite being observed for peripheral locations. Proxies should therefore be chosen in light of the desired accuracy for the epidemic situation under study. PMID:25010676

A randomized controlled trial of a new behavioral home-based nutrition education program, "Eat Well with CF," in adults with cystic fibrosis.

PubMed

Watson, Helen; Bilton, Diana; Truby, Helen

2008-05-01

Cystic fibrosis (CF) remains the most common genetically inherited disease in the white population and its prognosis is affected by nutritional status. Adults with the disease are now surviving longer and new strategies are required to ensure that they maintain optimal nutrition. This article reports preliminary data from a randomized controlled trial of a 10-week home-based behavioral nutrition intervention, "Eat Well with CF." Outcome measures of weight change over 6 and 12 months and changes in CF-specific nutrition knowledge score, self-efficacy score, reported dietary fat intake and health-related quality-of-life score were compared between the intervention group (n=34) and a standard care control group (n=34). The hypotheses to be tested were that adults with CF completing "Eat Well with CF" would have an improved nutritional status, improvement in specific nutrition knowledge, and an improvement in self-efficacy regarding their ability to cope with a special diet, compared to those receiving standard care. There were substantial improvements in the intervention group's specific CF nutrition knowledge score, self-efficacy score, and reported fat intake compared to control, but no substantial change in body mass index or health-related quality of life over time. Home-based nutrition education incorporating behavioral strategies can be an effective way to support adults with CF, enabling improvement in self-management skills in relation to diet and pancreatic enzyme replacement therapy. This study revealed gaps in basic nutrition knowledge and skills, inadequate knowledge of diet-disease links and pancreatic enzyme replacement therapy. These need to be identified when subjects progress from pediatric to adult care, and programs such as "Eat Well with CF" are a useful adjunct for registered dietitians trying to manage this diverse but growing population.

Bee Venom for the Treatment of Parkinson Disease - A Randomized Controlled Clinical Trial.

PubMed

Hartmann, Andreas; Müllner, Julia; Meier, Niklaus; Hesekamp, Helke; van Meerbeeck, Priscilla; Habert, Marie-Odile; Kas, Aurélie; Tanguy, Marie-Laure; Mazmanian, Merry; Oya, Hervé; Abuaf, Nissen; Gaouar, Hafida; Salhi, Sabrina; Charbonnier-Beaupel, Fanny; Fievet, Marie-Hélène; Galanaud, Damien; Arguillere, Sophie; Roze, Emmanuel; Degos, Bertrand; Grabli, David; Lacomblez, Lucette; Hubsch, Cécile; Vidailhet, Marie; Bonnet, Anne-Marie; Corvol, Jean-Christophe; Schüpbach, Michael

2016-01-01

In the present study, we examined the potential symptomatic and/or disease-modifying effects of monthly bee venom injections compared to placebo in moderatly affected Parkinson disease patients. We conducted a prospective, randomized double-blind study in 40 Parkinson disease patients at Hoehn & Yahr stages 1.5 to 3 who were either assigned to monthly bee venom injections or equivalent volumes of saline (treatment/placebo group: n = 20/20). The primary objective of this study was to assess a potential symptomatic effect of s.c. bee venom injections (100 μg) compared to placebo 11 months after initiation of therapy on United Parkinson’s Disease Rating Scale (UPDRS) III scores in the « off » condition pre-and post-injection at a 60 minute interval. Secondary objectives included the evolution of UPDRS III scores over the study period and [123I]-FP-CIT scans to evaluate disease progression. Finally, safety was assessed by monitoring specific IgE against bee venom and skin tests when necessary. After an 11 month period of monthly administration, bee venom did not significantly decrease UPDRS III scores in the « off » condition. Also, UPDRS III scores over the study course, and nuclear imaging, did not differ significantly between treatment groups. Four patients were excluded during the trial due to positive skin tests but no systemic allergic reaction was recorded. After an initial increase, specific IgE against bee venom decreased in all patients completing the trial. This study did not evidence any clear symptomatic or disease-modifying effects of monthly bee venom injections over an 11 month period compared to placebo using a standard bee venom allergy desensitization protocol in Parkinson disease patients. However, bee venom administration appeared safe in non-allergic subjects. Thus, we suggest that higher administration frequency and possibly higher individual doses of bee venom may reveal its potency in treating Parkinson disease. ClinicalTrials.gov NCT01341431.

Bee Venom for the Treatment of Parkinson Disease – A Randomized Controlled Clinical Trial

PubMed Central

Hartmann, Andreas; Müllner, Julia; Meier, Niklaus; Hesekamp, Helke; van Meerbeeck, Priscilla; Habert, Marie-Odile; Kas, Aurélie; Tanguy, Marie-Laure; Mazmanian, Merry; Oya, Hervé; Abuaf, Nissen; Gaouar, Hafida; Salhi, Sabrina; Charbonnier-Beaupel, Fanny; Fievet, Marie-Hélène; Galanaud, Damien; Arguillere, Sophie; Roze, Emmanuel; Degos, Bertrand; Grabli, David; Lacomblez, Lucette; Hubsch, Cécile; Vidailhet, Marie; Bonnet, Anne-Marie

2016-01-01

In the present study, we examined the potential symptomatic and/or disease-modifying effects of monthly bee venom injections compared to placebo in moderatly affected Parkinson disease patients. We conducted a prospective, randomized double-blind study in 40 Parkinson disease patients at Hoehn & Yahr stages 1.5 to 3 who were either assigned to monthly bee venom injections or equivalent volumes of saline (treatment/placebo group: n = 20/20). The primary objective of this study was to assess a potential symptomatic effect of s.c. bee venom injections (100 μg) compared to placebo 11 months after initiation of therapy on United Parkinson’s Disease Rating Scale (UPDRS) III scores in the « off » condition pre-and post-injection at a 60 minute interval. Secondary objectives included the evolution of UPDRS III scores over the study period and [123I]-FP-CIT scans to evaluate disease progression. Finally, safety was assessed by monitoring specific IgE against bee venom and skin tests when necessary. After an 11 month period of monthly administration, bee venom did not significantly decrease UPDRS III scores in the « off » condition. Also, UPDRS III scores over the study course, and nuclear imaging, did not differ significantly between treatment groups. Four patients were excluded during the trial due to positive skin tests but no systemic allergic reaction was recorded. After an initial increase, specific IgE against bee venom decreased in all patients completing the trial. This study did not evidence any clear symptomatic or disease-modifying effects of monthly bee venom injections over an 11 month period compared to placebo using a standard bee venom allergy desensitization protocol in Parkinson disease patients. However, bee venom administration appeared safe in non-allergic subjects. Thus, we suggest that higher administration frequency and possibly higher individual doses of bee venom may reveal its potency in treating Parkinson disease. Trial Registration ClinicalTrials.gov NCT01341431 PMID:27403743

Gender Differences in Knowledge, Attitudes and Practices towards Cardiovascular Disease and its Treatment among Asian Patients.

PubMed

Shen, Tong; Teo, Tse Yean; Yap, Jonathan Jl; Yeo, Khung Keong

2017-01-01

Introduction : Knowledge, attitudes and practices (KAP) impact on cardiac disease outcomes, with noted cultural and gender differences. In this Asian cohort, we aimed to analyse the KAP of patients towards cardiac diseases and pertinent factors that influence such behaviour, focusing on gender differences. Materials and Methods : A cross-sectional survey was performed among consecutive outpatients from a cardiac clinic over 2 months in 2014. Results : Of 1406 patients approached, 1000 (71.1%) responded (mean age 57.0 ± 12.7 years, 713 [71.3%] males). There was significant correlation between knowledge and attitude scores (r = 0.224, P <0.001), and knowledge and practice scores (r = 0.114, P <0.001). There was no correlation between attitude and practice scores. Multivariate predictors of higher knowledge scores included female sex, higher education, higher attitude and practice scores and prior coronary artery disease. Multivariate predictors of higher attitude scores included higher education, higher knowledge scores and non-Indian ethnicity. Multivariate predictors of higher practice scores included male sex, Indian ethnicity, older age, higher knowledge score and hypertension. Males had lower knowledge scores (85.8 ± 8.0% vs 88.0 ± 8.2%, P <0.001), lower attitude scores (91.4 ± 9.4% vs 93.2 ± 8.3%, P = 0.005) and higher practice scores (58.4 ± 18.7% vs 55.1 ± 19.3%, P = 0.013) than females. Conclusion : In our Asian cohort, knowledge of cardiovascular health plays a significant role in influencing attitudes and practices. There exists significant gender differences in KAP. Adopting gender-specific strategies for future public health campaigns could address the above gender differences.

Functional Neuroanatomical Correlates of The Frontal Assessment Battery Performance in Alzheimer Disease: A FDG-PET Study.

PubMed

Lee, Jun Ho; Byun, Min Soo; Sohn, Bo Kyung; Choe, Young Min; Yi, Dahyun; Han, Ji Young; Choi, Hyo Jung; Baek, Hyewon; Woo, Jong Inn; Lee, Dong Young

2015-09-01

We aimed to elucidate the functional neuroanatomical correlates of Frontal Assessment Battery (FAB) performances by applying [(18)F]fluorodeoxyglucose positron emission tomography (FDG-PET) to a large population of patients with Alzheimer disease (AD). The FAB was administered to 177 patients with AD, and regional cerebral glucose metabolism (rCMglc) was measured by FDG-PET scan. Correlations between FAB scores and rCMglc were explored using both region-of-interest-based (ROI-based) and voxel-based approaches. The ROI-based analysis showed that FAB scores correlated with the rCMglc of the dorsolateral prefrontal cortices. Voxel-based approach revealed significant positive correlations between FAB scores and rCMglc which were in various cortical regions including the temporal and parietal cortices as well as frontal regions, independent of age, gender, and education. After controlling the effect of global disease severity with Mini-Mental State Examination score, significant positive correlation was found only in the bilateral prefrontal regions. Although FAB scores are influenced by temporoparietal dysfunction due to the overall progression of AD, it likely reflects prefrontal dysfunction specifically regardless of global cognitive state or disease severity in patients with AD. © The Author(s) 2015.

Validation of the Leicester Cough Questionnaire in non-cystic fibrosis bronchiectasis.

PubMed

Murray, M P; Turnbull, K; MacQuarrie, S; Pentland, J L; Hill, A T

2009-07-01

Health-related quality of life is a potentially important marker for evaluating existing and new therapies in bronchiectasis. The Leicester Cough Questionnaire (LCQ) is a symptom specific questionnaire designed to assess the impact of cough severity, a major symptom of bronchiectasis. This study aimed to validate the LCQ in bronchiectasis. The validity, responsiveness and reliability of the LCQ were assessed as follows: ability to discriminate severe and mild disease; change in score following antibiotic treatment for exacerbations; repeatability over a 6-month period in stable disease; and comparison with the St George's Respiratory Questionnaire (SGRQ). In total, 120 patients (51 with severe disease, 29 with moderate disease and 40 with mild disease) completed the LCQ and SGRQ. The area under the receiver-operator curve was good for both severe and mild disease (0.84 and 0.80 respectively, p<0.0001). Following 2 weeks' antibiotic treatment, the median LCQ score (interquartile range) improved from 11.3 (9.3-13.7) to 17.8 (15-18.8) (p<0.0001). The LCQ score was repeatable over 6 months in stable disease (intraclass correlation coefficient of 0.96 (95%CI 0.93-0.97), p<0.0001). Correlation between the LCQ and SGRQ scores was -0.7 in both stable disease and exacerbations (p<0.0001). The LCQ can discriminate disease severity, is responsive to change and is reliable for use in non-cystic fibrosis bronchiectasis.

The LupusQoL and associations with demographics and clinical measurements in patients with systemic lupus erythematosus.

PubMed

McElhone, Kathleen; Castelino, Madhura; Abbott, Janice; Bruce, Ian N; Ahmad, Yasmeen; Shelmerdine, Joanna; Peers, Kate; Isenberg, David; Ferenkeh-Koroma, Ada; Griffiths, Bridget; Akil, Mohammed; Maddison, Peter; Gordon, Caroline; Teh, Lee-Suan

2010-11-01

Having developed and validated a disease-specific health-related quality of life (HRQOL) measure for patients with systemic lupus erythematosus (SLE), the LupusQoL, we determined its relationship to demographic and clinical measurements in a group of patients with SLE. A group of 322 outpatients completed the LupusQoL. Demographic (age, sex, marital status, ethnicity) and clinical variables (disease duration, disease activity, damage) were recorded. Associations between the 8 LupusQoL domains and age, disease duration, disease activity, and damage were explored using Spearman's correlation coefficients. Differences in LupusQoL scores were examined for sex and marital status using the Mann-Whitney U test. Ethnic groups were compared using ANOVA. All domains of LupusQoL were impaired, with fatigue (56.3) being the worst affected and body image (80.0) the least. The correlations between the LupusQoL domain scores and age (r = -0.01 to -0.22) and disease duration (r = 0 to 0.16) were absent or weak. Similarly, there were no significant differences in the LupusQoL scores regarding sex, marital status, or the 3 main ethnic groups (Black-Caribbean, Asian, White). Although there were statistically significant correlations between the scores of the LupusQoL domains and some scores of the British Isles Lupus Assessment Group index (r = -0.22 to 0.09) and the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (r = -0.29 to 0.21), these were weak. HRQOL was impaired in this cohort of outpatients with SLE as assessed by the validated lupus-specific LupusQoL. There were no clinically important associations between the 8 domains of the LupusQoL and clinical or demographic variables in this group of patients. Thus, the LupusQoL is a relatively independent outcome measure in patients with SLE.

The prediction of self-care behaviors in end-stage renal disease patients using Leventhal's Self-Regulatory Model.

PubMed

O'Connor, Susan M; Jardine, Alan G; Millar, Keith

2008-08-01

To assess the utility of Leventhal's Self-Regulatory Model (SRM) to predict self-care behavior with regard to dietary, medication, and fluid regimes in end-stage renal disease (ESRD) patients. In a prospective study, ESRD patients treated via hospital-based haemodialysis (N=73) were screened for cognitive deficits and completed questionnaires that enquired about illness perceptions, coping strategies, knowledge of kidney disease, and psychological distress at Time 1. Physiological proxy measures of self-care behaviors regarding diet (serum potassium levels), fluid intake (mean and standard deviation of interdialytic weight gain), and medication (serum phosphate levels) regimes were collected 3 weeks later at Time 2. Illness representations (emotional and timeline perceptions) predicted self-care behaviors with regard to diet and medication. Emotion-focused coping strategies predicted higher levels of variation in adherence to fluid restrictions. Younger males were less likely to adhere to the fluid restrictions. The SRM has predictive utility. Psychological interventions should focus on alleviating disease-specific distress and challenging erroneous timeline perceptions in order to increase adherence to dietary and medication regimes in ESRD patients. A more specific measure of coping for ESRD is required to clarify the role of coping strategies in this population. Younger, male patients should be targeted for extra support with fluid restrictions.

Parent proxy-reported quality of life for children with cerebral palsy: is it related to parental psychosocial distress?

PubMed

Davis, E; Mackinnon, A; Waters, E

2012-07-01

Parent-proxy reports of quality of life (QOL) are often used to guide decisions about children with cerebral palsy (CP), although little is known about the factors that influence parent-proxy reports. The aim of this study was to examine (i) the relationship between parental psychosocial distress and parent proxy-reported QOL; and (ii) whether parental psychosocial distress mediates the relationship between child impairment and proxy-reported QOL. A sample of 201 primary caregivers of children aged 4-12 years with CP completed the Cerebral Palsy Quality of Life Questionnaire for Children, a condition-specific QOL instrument, and a measure of psychosocial distress, the Kessler 10. The children, evenly distributed by gender (56% male) were sampled across Gross Motor Function Classification System levels (Level I = 18%, II = 28%, III = 14%, IV = 11%, V = 27%). Consistent with the hypotheses, parental distress was negatively correlated with all domains of parent proxy-reported QOL (r = -0.18 to r = -0.55). The relationship between impairment and proxy-reported QOL was mediated by parental distress for five of the seven domains of QOL (social well-being and acceptance, feelings about functioning, participation and physical health, emotional well-being and self-esteem, and pain and impact of disability). Child impairment did not predict access to services or family health. This is the first study that assesses the relationship between parental distress and proxy-reported QOL for children with CP. Although the cross-sectional nature of the available data precludes any statements of causality, the results suggest that, when using parent proxy, the parents' psychological state should also be measured. This is particularly important when, as is often the case for child disability research, proxy-reported QOL are the only available data. © 2011 Blackwell Publishing Ltd.

What does my patient's coronary artery calcium score mean? Combining information from the coronary artery calcium score with information from conventional risk factors to estimate coronary heart disease risk

PubMed Central

Pletcher, Mark J; Tice, Jeffrey A; Pignone, Michael; McCulloch, Charles; Callister, Tracy Q; Browner, Warren S

2004-01-01

Background The coronary artery calcium (CAC) score is an independent predictor of coronary heart disease. We sought to combine information from the CAC score with information from conventional cardiac risk factors to produce post-test risk estimates, and to determine whether the score may add clinically useful information. Methods We measured the independent cross-sectional associations between conventional cardiac risk factors and the CAC score among asymptomatic persons referred for non-contrast electron beam computed tomography. Using the resulting multivariable models and published CAC score-specific relative risk estimates, we estimated post-test coronary heart disease risk in a number of different scenarios. Results Among 9341 asymptomatic study participants (age 35–88 years, 40% female), we found that conventional coronary heart disease risk factors including age, male sex, self-reported hypertension, diabetes and high cholesterol were independent predictors of the CAC score, and we used the resulting multivariable models for predicting post-test risk in a variety of scenarios. Our models predicted, for example, that a 60-year-old non-smoking non-diabetic women with hypertension and high cholesterol would have a 47% chance of having a CAC score of zero, reducing her 10-year risk estimate from 15% (per Framingham) to 6–9%; if her score were over 100, however (a 17% chance), her risk estimate would be markedly higher (25–51% in 10 years). In low risk scenarios, the CAC score is very likely to be zero or low, and unlikely to change management. Conclusion Combining information from the CAC score with information from conventional risk factors can change assessment of coronary heart disease risk to an extent that may be clinically important, especially when the pre-test 10-year risk estimate is intermediate. The attached spreadsheet makes these calculations easy. PMID:15327691

Physical activity questionnaires for youth: a systematic review of measurement properties.

PubMed

Chinapaw, Mai J M; Mokkink, Lidwine B; van Poppel, Mireille N M; van Mechelen, Willem; Terwee, Caroline B

2010-07-01

Because of the diversity in available questionnaires, it is not easy for researchers to decide which instrument is most suitable for his or her specific demands. Therefore, we systematically summarized and appraised studies examining measurement properties of self-administered and proxy-reported physical activity (PA) questionnaires in youth. Literature was identified through searching electronic databases (PubMed, EMBASE using 'EMBASE only' and SportDiscus) until May 2009. Studies were included if they reported on the measurement properties of self-administered and proxy-reported PA questionnaires in youth (mean age <18 years) and were published in the English language. Methodological quality and results of included studies was appraised using a standardized checklist (qualitative attributes and measurement properties of PA questionnaires [QAPAQ]). We included 54 manuscripts examining 61 versions of questionnaires. None of the included questionnaires showed both acceptable reliability and validity. Only seven questionnaires received a positive rating for reliability. Reported validity varied, with correlations between PA questionnaires and accelerometers ranging from very low to high (previous day PA recall: correlation coefficient [r] = 0.77). In general, PA questionnaires for adolescents correlated better with accelerometer scores than did those for children. From this systematic review, we conclude that no questionnaires were available with both acceptable reliability and validity. Considerably more high-quality research is required to examine the validity and reliability of promising PA questionnaires for youth.

Common susceptibility alleles and SQSTM1 mutations predict disease extent and severity in a multinational study of patients with Paget's disease.

PubMed

Albagha, Omar M E; Visconti, Micaela Rios; Alonso, Nerea; Wani, Sachin; Goodman, Kirsteen; Fraser, William D; Gennari, Luigi; Merlotti, Daniela; Gianfrancesco, Fernando; Esposito, Teresa; Rendina, Domenico; di Stefano, Marco; Isaia, Giancarlo; Brandi, Maria Luisa; Giusti, Francesca; Del Pino-Montes, Javier; Corral-Gudino, Luis; Gonzalez-Sarmiento, Rogelio; Ward, Lynley; Rea, Sarah L; Ratajczak, Thomas; Walsh, John P; Ralston, Stuart H

2013-11-01

Paget's disease of bone (PDB) has a strong genetic component. Here, we investigated possible associations between genetic variants that predispose to PDB and disease severity. Allelic variants identified as predictors of PDB from genome-wide association studies were analyzed in 1940 PDB patients from the United Kingdom, Italy, Western Australia, and Spain. A cumulative risk allele score was constructed by adding the variants together and relating this to markers of disease severity, alone and in combination with SQSTM1 mutations. In SQSTM1-negative patients, risk allele scores in the highest tertile were associated with a 27% increase in disease extent compared with the lowest tertile (p < 0.00001) with intermediate values in the middle tertile (20% increase; p = 0.0007). The effects were similar for disease severity score, which was 15% (p = 0.01) and 25% (p < 0.00001) higher in the middle and upper tertiles, respectively. Risk allele score remained a significant predictor of extent and severity when SQSTM-positive individuals were included, with an effect size approximately one-third of that observed with SQSTM1 mutations. A genetic risk score was developed by combining information from both markers, which identified subgroups of individuals with low, medium, and high levels of severity with a specificity of 70% and sensitivity of 55%. Risk allele scores and SQSTM1 mutations both predict extent and severity of PDB. It is possible that with further refinement, genetic profiling may be of clinical value in identifying individuals at high risk of severe disease who might benefit from enhanced surveillance and early intervention. © 2013 American Society for Bone and Mineral Research.

The Localized Scleroderma Cutaneous Assessment Tool: responsiveness to change in a pediatric clinical population.

PubMed

Kelsey, Christina E; Torok, Kathryn S

2013-08-01

Lack of agreement on how to accurately capture disease outcomes in localized scleroderma (LS) has hindered the development of efficacious treatment protocols. The LS Cutaneous Assessment Tool (LoSCAT), consisting of the modified LS Skin Severity Index (mLoSSI) and the LS Damage Index, has potential for use in clinical trials. The goal of this article is to further evaluate the clinical responsiveness of the LoSCAT. Based on the modifiable nature of disease activity versus damage, we expected the mLoSSI to be responsive to change. At 2 study visits, a physician completed the LoSCAT and Physician Global Assessment (PGA) of Disease Activity and of Disease Damage for 29 patients with LS. Spearman correlations were used to examine the relationships between the change in the LoSCAT and the PGA scores. To evaluate contrasted group validity, patients were grouped according to disease activity classification and change scores of groups were compared. Minimal clinically important differences were calculated and compared with the standard error of measurement. Change in the mLoSSI score correlated strongly with change in the PGA of Disease Activity score, whereas change in the LS Damage Index score correlated weakly with change in the PGA of Disease Damage score. The mLoSSI and PGA of Disease Activity exhibited contrasted group validity. Minimal clinically important differences for the activity measures were greater than the respective standard errors of measurement. Only 2 study visits were included in analysis. This study gives further evidence that the LoSCAT, specifically the mLoSSI, is a responsive, valid measure of activity in LS and should be used in future treatment studies. Copyright © 2013 American Academy of Dermatology, Inc. Published by Mosby, Inc. All rights reserved.

Assessment of disease-specific knowledge in Australian children with inflammatory bowel disease and their parents.

PubMed

Day, Andrew S; Mylvaganam, Gaithri; Shalloo, Nollaig; Clarkson, Cathy; Leach, Steven T; Lemberg, Daniel A

2017-08-01

Disease-specific knowledge may influence disease outcome and quality of life in children with inflammatory bowel disease (IBD). This prospective study aimed to define IBD-related knowledge in a group of Australian children with IBD and their parents using a validated measure of disease-specific knowledge, the Inflammatory Bowel Disease Knowledge Inventory Device (IBD-KID). Children (less than 18 years) diagnosed with IBD who were members of the Australian patient support organisation were identified. Each family was sent copies of the IBD-KID. Children aged 10-18 years and all parents were asked to complete the IBD-KID and to also provide demographic details and disease characteristics. Replies were received from 196 families: 262 parents and 128 children completed questionnaires. Most children had a diagnosis of Crohn disease (65%) and 51% were male. Children diagnosed in the preceding 6 years scored higher than those with longer time since diagnosis. Parents had better scores in the IBD-KID than the children (P < 0.0001). Overall, parents and children had poor understanding of key management issues for IBD (such as side effects of steroids), important outcomes (e.g. growth) and the use of complementary therapies. Consistent patterns of IBD-related knowledge were noted in this large group of Australian children with IBD and their parents. Measurement of disease-related knowledge with the IBD-KID can identify gaps in understanding, thereby permitting focused educational activities. Although these knowledge gaps may impact upon outcomes, further prospective studies are now required to elucidate the relationships between enhanced knowledge and specific outcomes. © 2017 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).

Adolescents' Observations of Parent Pain Behaviors: Preliminary Measure Validation and Test of Social Learning Theory in Pediatric Chronic Pain.

PubMed

Stone, Amanda L; Walker, Lynn S

2017-01-01

Evaluate psychometric properties of a measure of adolescents’ observations of parental pain behaviors and use this measure to test hypotheses regarding pain-specific social learning. We created a proxy-report of the Patient Reported Outcomes Measurement Information System (PROMIS) Pain Behavior–Short Form (PPB) for adolescents to report on parental pain behaviors, which we labeled the PPB-Proxy. Adolescents (n = 138, mean age = 14.20) with functional abdominal pain completed the PPB-Proxy and a parent completed the PPB. Adolescents and their parents completed measures of pain and disability during the adolescent’s clinic visit for abdominal pain. Adolescents subsequently completed a 7-day pain diary period. The PPB-Proxy moderately correlated with the PPB, evidencing that adolescents observe and can report on parental pain behaviors. Both the PPB-Proxy and PPB significantly correlated with adolescents’ pain-related disability. Parental modeling of pain behaviors could represent an important target for assessment and treatment in pediatric chronic pain patients.

Two approaches to timescale modeling for proxy series with chronological errors.

NASA Astrophysics Data System (ADS)

Divine, Dmitry; Godtliebsen, Fred

2010-05-01

A substantial part of proxy series used in paleoclimate research has chronological uncertainties. Any constructed timescale is therefore only an estimate of the true, but unknown timescale. An accurate assessment of the timing of events in the paleoproxy series and networks, as well as the use of proxy-based paleoclimate reconstructions in GCM model scoring experiments, requires the effect of these errors to be properly taken into account. We consider two types of the timescale error models corresponding to the two basic approaches to construction of the (depth-) age scale in a proxy series. Typically, a chronological control of a proxy series stemming from all types of marine and terrestrial sedimentary archives is based on the use of 14C dates, reference horizons or their combination. Depending on the prevalent origin of the available fix points (age markers) the following approaches to timescale modeling are proposed. 1) 14C dates. The algorithm uses Markov-chain Monte Carlo sampling technique to generate the ordered set of perturbed age markers. Proceeding sequentially from the youngest to the oldest fixpoint, the sampler draws random numbers from the age distribution of each individual 14C date. Every following perturbed age marker is generated such that condition of no age reversal is fulfilled. The relevant regression model is then applied to construct a simulated timescale. 2) Reference horizons (f. ex. volcanic or dust layers, T bomb peak) generally provide absolutely dated fixpoints. Due to a natural variability in sedimentation (accumulation) rate, however, the dating uncertainty in the interpolated timescale tends to grow together with a span to the nearest fixpoint. The (accumulation, sedimentation) process associated with formation of a proxy series is modelled using stochastic Levy process. The respective increments for the process are drawn from the log-normal distribution with the mean/variance ratio prescribed as a site(proxy)- dependent external parameter. The number of generated annual increments corresponds to a time interval between the considered reference horizons. The simulated series is then rescaled to match the length of the actual core section being modelled. Within each method the multitude of timescales is generated creating a number of possible realisations of a proxy series or a proxy based reconstruction in the time domain. This allows consideration of a proxy record in a probabilistic framework. The effect of accounting for uncertainties in chronology on a reconstructed environmental variable is illustrated with the two case studies of marine sediment records.

Developing an instrument to measure heart failure disease management program intensity and complexity.

PubMed

Riegel, Barbara; Lee, Christopher S; Sochalski, Julie

2010-05-01

Comparing disease management programs and their effects is difficult because of wide variability in program intensity and complexity. The purpose of this effort was to develop an instrument that can be used to describe the intensity and complexity of heart failure (HF) disease management programs. Specific composition criteria were taken from the American Heart Association (AHA) taxonomy of disease management and hierarchically scored to allow users to describe the intensity and complexity of the domains and subdomains of HF disease management programs. The HF Disease Management Scoring Instrument (HF-DMSI) incorporates 6 of the 8 domains from the taxonomy: recipient, intervention content, delivery personnel, method of communication, intensity/complexity, and environment. The 3 intervention content subdomains (education/counseling, medication management, and peer support) are described separately. In this first test of the HF-DMSI, overall intensity (measured as duration) and complexity were rated using an ordinal scoring system. Possible scores reflect a clinical rationale and differ by category, with zero given only if the element could potentially be missing (eg, surveillance by remote monitoring). Content validity was evident as the instrument matches the existing AHA taxonomy. After revision and refinement, 2 authors obtained an inter-rater reliability intraclass correlation coefficient score of 0.918 (confidence interval, 0.880 to 0.944, P<0.001) in their rating of 12 studies. The areas with most variability among programs were delivery personnel and method of communication. The HF-DMSI is useful for describing the intensity and complexity of HF disease management programs.

Measuring adolescents' HRQoL via self reports and parent proxy reports: an evaluation of the psychometric properties of both versions of the KINDL-R instrument.

PubMed

Erhart, Michael; Ellert, Ute; Kurth, Bärbel-Maria; Ravens-Sieberer, Ulrike

2009-08-26

Several instruments are available to assess children's health-related quality of life (HRQoL) based on self reports as well as proxy reports from parents. Previous studies have found only low-to-moderate agreement between self and proxy reports, but few studies have explicitly compared the psychometric qualities of both. This study compares the reliability, factorial validity and convergent and known group validity of the self-report and parent-report versions of the HRQoL KINDL-R questionnaire for children and adolescents. Within the nationally representative cross-sectional German Health Interview and Examination Survey for Children and Adolescents (KiGGS), 6,813 children and adolescents aged 11 to 17 years completed the KINDL-R generic HRQoL instrument while their parents answered the KINDL proxy version (both in paper-and-pencil versions). Cronbach's alpha and confirmatory factor-analysis models (linear structural equation model) were obtained. Convergent and discriminant validity were assessed by calculating the Pearson's correlation coefficient for the Strengths and Difficulties Questionnaire. Known-groups differences were examined (ANOVA) for obese children and children with a lower familial socio-economic status. The parent reports achieved slightly higher Cronbach's alpha values for the total score (0.86 vs. 0.83) and most sub-scores. Confirmatory factor analysis revealed an acceptable fit of the six-dimensional measurement model of the KINDL for the parent (RMSEA=0.07) and child reports (RMSEA=0.06). Factorial invariance across the two versions did not hold with regards to the pattern of loadings, the item errors and the covariation between latent concepts. However the magnitude of the differences was rather small. The parent report version achieved slightly higher convergent validity (r=0.44-0.63 vs. r=0.33-0.59) in the Strengths and Difficulties Questionnaire. No clear differences were observed for known-groups validity. Our study showed that parent proxy reports and child self reports on the child's HRQoL slightly differ with regards to how the perceptions, evaluations and possibly the affective resonance of each group are structured and internally consistent. Overall, the parent reports achieved slightly higher reliability and thus are favoured for the examination of small samples. No version was universally superior with regards to the validity of the measurements. Whenever possible, children's HRQoL should be measured via both sources of information.

A point-by-point multi-scale surface temperature reconstruction method and tests by pseudo proxy experiments

NASA Astrophysics Data System (ADS)

Chen, X.

2016-12-01

This study present a multi-scale approach combining Mode Decomposition and Variance Matching (MDVM) method and basic process of Point-by-Point Regression (PPR) method. Different from the widely applied PPR method, the scanning radius for each grid box, were re-calculated considering the impact from topography (i.e. mean altitudes and fluctuations). Thus, appropriate proxy records were selected to be candidates for reconstruction. The results of this multi-scale methodology could not only provide the reconstructed gridded temperature, but also the corresponding uncertainties of the four typical timescales. In addition, this method can bring in another advantage that spatial distribution of the uncertainty for different scales could be quantified. To interpreting the necessity of scale separation in calibration, with proxy records location over Eastern Asia, we perform two sets of pseudo proxy experiments (PPEs) based on different ensembles of climate model simulation. One consist of 7 simulated results by 5 models (BCC-CSM1-1, CSIRO-MK3L-1-2, HadCM3, MPI-ESM-P, and Giss-E2-R) of the "past1000" simulation from Coupled Model Intercomparison Project Phase 5. The other is based on the simulations of Community Earth System Model Last Millennium Ensemble (CESM-LME). The pseudo-records network were obtained by adding the white noise with signal-to-noise ratio (SNR) increasing from 0.1 to 1.0 to the simulated true state and the locations mainly followed the PAGES-2k network in Asia. Totally, 400 years (1601-2000) simulation was used for calibration and 600 years (1001-1600) for verification. The reconstructed results were evaluated by three metrics 1) root mean squared error (RMSE), 2) correlation and 3) reduction of error (RE) score. The PPE verification results have shown that, in comparison with ordinary linear calibration method (variance matching), the RMSE and RE score of PPR-MDVM are improved, especially for the area with sparse proxy records. To be noted, in some periods with large volcanic activities, the RMSE of MDVM get larger than VM for higher SNR cases. It should be inferred that the volcanic eruptions might blur the intrinsic characteristics of multi-scales variabilities of the climate system and the MDVM method would show less advantage in that case.

Color discrimination performance in patients with Alzheimer's disease.

PubMed

Salamone, Giovanna; Di Lorenzo, Concetta; Mosti, Serena; Lupo, Federica; Cravello, Luca; Palmer, Katie; Musicco, Massimo; Caltagirone, Carlo

2009-01-01

Visual deficits are frequent in Alzheimer's disease (AD), yet little is known about the nature of these disturbances. The aim of the present study was to investigate color discrimination in patients with AD to determine whether impairment of this visual function is a cognitive or perceptive/sensory disturbance. A cross-sectional clinical study was conducted in a specialized dementia unit on 20 patients with mild/moderate AD and 21 age-matched normal controls. Color discrimination was measured by the Farnsworth-Munsell 100 hue test. Cognitive functioning was measured with the Mini-Mental State Examination (MMSE) and a comprehensive battery of neuropsychological tests. The scores obtained on the color discrimination test were compared between AD patients and controls adjusting for global and domain-specific cognitive performance. Color discrimination performance was inversely related to MMSE score. AD patients had a higher number of errors in color discrimination than controls (mean +/- SD total error score: 442.4 +/- 84.5 vs. 304.1 +/- 45.9). This trend persisted even after adjustment for MMSE score and cognitive performance on specific cognitive domains. A specific reduction of color discrimination capacity is present in AD patients. This deficit does not solely depend upon cognitive impairment, and involvement of the primary visual cortex and/or retinal ganglionar cells may be contributory.

Association between disease-specific quality-of-life and magnetic resonance imaging outcomes in a clinical trial of prolotherapy for knee osteoarthritis

PubMed Central

Rabago, David; Kijowski, Richard; Woods, Michael; Patterson, Jeffrey J.; Mundt, Marlon; Zgierska, Aleksandra; Grettie, Jessica; Lyftogt, John; Fortney, Luke

2013-01-01

Objective To assess the relationship between knee osteoarthritis (KOA)-specific quality-of-life (QoL) and intra-articular cartilage volume (CV) in participants treated with prolotherapy. KOA is characterized by CV loss and multifactorial pain. Prolotherapy is an injection therapy reported to improve KOA-related QoL compared to blinded saline injections and at-home exercise but the mechanism of action is unknown. Design Two-arm (Prolotherapy, Control), partially blinded, controlled trial. Setting Outpatient. Participants 37 adults with ≥3 months of symptomatic KOA. Intervention Prolotherapy: 5 monthly injection sessions; Control: blinded saline injections or at-home exercise. Outcome Measures Primary: KOA-specific QoL scores (baseline, 5, 9, 12, 26, 52 weeks; Western Ontario McMaster University Osteoarthritis Index, WOMAC). Secondary: KOA-specific pain, stiffness, function (WOMAC subscales), magnetic resonance imaging (MRI)-assessed CV (baseline, 52 weeks). Results Knee-specific QoL improvement among Prolotherapy participants exceeded that of Controls (17.6±3.2 versus 8.6±5.0 points, p=0.05) at 52 weeks. Both groups lost CV over time (p<0.05); no between-group differences were noted (p=0.98). While Prolotherapy participants lost CV at varying rates, those who lost the least CV (“Stable CV”) had the greatest improvement in pain scores. Among Prolotherapy, but not Control participants, the change in CV and the change in pain (but not stiffness or function) scores were correlated; each 1% CV loss was associated with 2.7% less improvement in pain score (p<0.05). Conclusions Prolotherapy resulted in safe, substantial improvement in KOA-specific QoL compared to Control over 52-weeks. Among prolotherapy participants, but not Controls, MRI-assessed CV change (CV stability) predicted pain severity score change, suggesting prolotherapy may have pain-specific disease-modifying effect. Further research is warranted. PMID:23850615

Claims-based proxies of patient instability among commercially insured adults with schizophrenia

PubMed Central

Ruetsch, Charles; Un, Hyong; Waters, Heidi C

2018-01-01

Objective Schizophrenia (Sz) patients are among the highest utilizers of hospital-based services. Prevention of relapse is in part a treatment goal in order to reduce hospital admissions. However, predicting relapse is a challenge, particularly for payers and disease management firms with only access to claims data. Understandably, such organizations have had little success predicting relapse. A tool that allows payers to identify patients at elevated risk of relapse could facilitate targeted interventions prior to relapse and avoid rehospitalization. In this study, a series of proxy measures of patient instability, calculated from claims data were examined for their utility in identifying Sz patients at elevated risk of relapse. Methods Aetna claims were used to assess the relationship between instability of Sz patients and valence and magnitude of antipsychotic (AP) medication change during a 2-year period. Six proxies of instability including hospital admissions, emergency department visits, medication utilization patterns, and use of outpatient services were identified. Results were replicated using claims data from Truven MarketScan®. Results Patients who switched AP ingredient had the highest overall instability at the point of switch and the second steepest decline in instability following switch. Those who changed to a long-acting injectable AP showed the second highest level of instability and the steepest decrease in instability following the change. Patients augmented with a second AP showed the smallest increase in instability, up to the switch. Results were directionally consistent between the two data sets. Conclusion Using claims-based proxy measures to estimate instability may provide a viable method to better understand Sz patient markers of change in disease severity. Also, such proxies could be used to identify those individuals with the greatest need for treatment modification preventing relapse, improving patient outcomes, and reducing the burden of illness. PMID:29765242

The Autism-Spectrum Quotient and Visual Search: Shallow and Deep Autistic Endophenotypes

ERIC Educational Resources Information Center

Gregory, B. L.; Plaisted-Grant, K. C.

2016-01-01

A high Autism-Spectrum Quotient (AQ) score (Baron-Cohen et al. in "J Autism Dev Disord" 31(1):5-17, 2001) is increasingly used as a proxy in empirical studies of perceptual mechanisms in autism. Several investigations have assessed perception in non-autistic people measured for AQ, claiming the same relationship exists between…

Effects of inflammatory bowel disease on students' adjustment to college.

PubMed

Almadani, S Bashar; Adler, Jeremy; Browning, Jeff; Green, Elan H; Helvie, Karla; Rizk, Rafat S; Zimmermann, Ellen M

2014-12-01

Successful adjustment to college is required for academic success. We investigated whether inflammatory bowel disease (IBD) activity affects this adjustment process. We created an online survey that included a Student Adaptation to College Questionnaire (SACQ), a general quality of life survey (SF-12), a disease-specific short IBD quality of life survey (SIBDQ), and disease activity indices. Undergraduate students across the United States were recruited via social media. Surveys were completed by 65 students with Crohn's disease (CD), 28 with ulcerative colitis, and 214 healthy students (controls). Disease-specific quality of life (SIBDQ results) correlated with IBD disease activity (rho = -0.79; P < .0001). High college adjustment scores (SACQ results) were associated with high SIBDQ scores. Students with IBD had lower mean SACQ scores than controls (307 vs 290; P < .0001). There was a modest inverse correlation between CD activity and SACQ (rho = -0.24; P < .04). Disease activity in students with CD was associated strongly with their self-reported ability to keep up with academic work (P < .0089) and confidence in their ability to meet future academic challenges (P < .0015). Students with active IBD reported feeling as if they were not academically successful (P < .018), and students with ulcerative colitis reported irregular class attendance (P < .043). Students with IBD do not adjust to college as well as healthy students. Disease activity affects their adjustment and attitudes about academics-especially among students with CD. Successful adjustment is important for academic success, affecting graduation rates and future economic success. Strategies to increase disease control and provide social and emotional support during college could improve adjustment to college and academic performance, and increase patients' potential. Copyright © 2014 AGA Institute. Published by Elsevier Inc. All rights reserved.

Educational Attainment is not a Good Proxy for Cognitive Function in Methamphetamine Dependence

PubMed Central

Dean, Andy C.; Hellemann, Gerhard; Sugar, Catherine A.; London, Edythe D.

2014-01-01

We sought to test the hypothesis that methamphetamine use interferes with both the quantity and quality of one's education, such that the years of education obtained by methamphetamine dependent individuals serves to underestimate general cognitive functioning and overestimate the quality of academic learning. Thirty-six methamphetamine-dependent participants and 42 healthy comparison subjects completed cognitive tests and self-report measures in Los Angeles, California. An overall cognitive battery score was used to assess general cognition, and vocabulary knowledge was used as a proxy for the quality of academic learning. Linear regression procedures were used for analyses. Supporting the hypothesis that methamphetamine use interferes with the quantity of education, we found that a) earlier onset of methamphetamine use was associated with fewer years of education (p < .01); b) using a normative model developed in healthy participants, methamphetamine-dependent participants had lower educational attainment than predicted from their demographics and performance on the cognitive battery score (p < .01); and c) greater differences between methamphetamine-dependent participants' predicted and actual educational attainment were associated with an earlier onset of MA use (p ≤ .01). Supporting the hypothesis that methamphetamine use interferes with the quality of education, years of education received prior to the onset of methamphetamine use was a better predictor of a proxy for academic learning, vocabulary knowledge, than was the total years of education obtained. Results support the hypothesis that methamphetamine use interferes with the quantity and quality of educational exposure, leading to under- and overestimation of cognitive function and academic learning, respectively. PMID:22206606

Educational attainment is not a good proxy for cognitive function in methamphetamine dependence.

PubMed

Dean, Andy C; Hellemann, Gerhard; Sugar, Catherine A; London, Edythe D

2012-06-01

We sought to test the hypothesis that methamphetamine use interferes with both the quantity and quality of one's education, such that the years of education obtained by methamphetamine dependent individuals serves to underestimate general cognitive functioning and overestimate the quality of academic learning. Thirty-six methamphetamine-dependent participants and 42 healthy comparison subjects completed cognitive tests and self-report measures in Los Angeles, California. An overall cognitive battery score was used to assess general cognition, and vocabulary knowledge was used as a proxy for the quality of academic learning. Linear regression procedures were used for analyses. Supporting the hypothesis that methamphetamine use interferes with the quantity of education, we found that (a) earlier onset of methamphetamine use was associated with fewer years of education (p<.01); (b) using a normative model developed in healthy participants, methamphetamine-dependent participants had lower educational attainment than predicted from their demographics and performance on the cognitive battery score (p<.01); and (c) greater differences between methamphetamine-dependent participants' predicted and actual educational attainment were associated with an earlier onset of MA use (p≤.01). Supporting the hypothesis that methamphetamine use interferes with the quality of education, years of education received prior to the onset of methamphetamine use was a better predictor of a proxy for academic learning, vocabulary knowledge, than was the total years of education obtained. Results support the hypothesis that methamphetamine use interferes with the quantity and quality of educational exposure, leading to under- and overestimation of cognitive function and academic learning, respectively. Copyright © 2011. Published by Elsevier Ireland Ltd.

Benthic Foraminifera Clumped Isotope Calibration

NASA Astrophysics Data System (ADS)

Piasecki, A.; Marchitto, T. M., Jr.; Bernasconi, S. M.; Grauel, A. L.; Tisserand, A. A.; Meckler, N.

2017-12-01

Due to the widespread spatial and temporal distribution of benthic foraminifera within ocean sediments, they are a commonly used for reconstructing past ocean temperatures and environmental conditions. Many foraminifera-based proxies, however, require calibration schemes that are species specific, which becomes complicated in deep time due to extinct species. Furthermore, calibrations often depend on seawater chemistry being stable and/or constrained, which is not always the case over significant climate state changes like the Eocene Oligocene Transition. Here we study the effect of varying benthic foraminifera species using the clumped isotope proxy for temperature. The benefit of this proxy is that it is independent of seawater chemistry, whereas the downside is that it requires a relatively large sample amounts. Due to recent advancements in sample processing that reduce the sample weight by a factor of 10, clumped isotopes can now be applied to a range paleoceanographic questions. First however, we need to prove that, unlike for other proxies, there are no interspecies differences with clumped isotopes, as is predicted by first principles modeling. We used a range of surface sediment samples covering a temperature range of 1-20°C from the Pacific, Mediterranean, Bahamas, and the Atlantic, and measured the clumped isotope composition of 11 different species of benthic foraminifera. We find that there are indeed no discernible species-specific differences within the sample set. In addition, the samples have the same temperature response to the proxy as inorganic carbonate samples over the same temperature range. As a result, we can now apply this proxy to a wide range of samples and foraminifera species from different ocean basins with different ocean chemistry and be confident that observed signals reflect variations in temperature.

Administering the Sarcoidosis Health Questionnaire to sarcoidosis patients in Serbia.

PubMed

Mihailović-Vučinić, Violeta; Gvozdenović, Branislav; Stjepanović, Mihailo; Vuković, Mira; Marković-Denić, Ljiljana; Milovanović, Aleksandar; Videnović-Ivanov, Jelica; Žugić, Vladimir; Škodrić-Trifunović, Vesna; Filipović, Snežana; Omčikus, Maja

2016-04-01

The aim of this study was to use a Serbian-language version of the disease-specific, self-report Sarcoidosis Health Questionnaire (SHQ), which was designed and originally validated in the United States, to assess health status in sarcoidosis patients in Serbia, as well as validating the instrument for use in the country. This was a cross-sectional study of 346 patients with biopsy-confirmed sarcoidosis. To evaluate the health status of the patients, we used the SHQ, which was translated into Serbian for the purposes of this study. We compared SHQ scores by patient gender and age, as well as by disease duration and treatment. Lower SHQ scores indicate poorer health status. The SHQ scores demonstrated differences in health status among subgroups of the sarcoidosis patients evaluated. Health status was found to be significantly poorer among female patients and older patients, as well as among those with chronic sarcoidosis or extrapulmonary manifestations of the disease. Monotherapy with methotrexate was found to be associated with better health status than was monotherapy with prednisone or combination therapy with prednisone and methotrexate. The SHQ is a reliable, disease-specific, self-report instrument. Although originally designed for use in the United States, the SHQ could be a useful tool for the assessment of health status in various non-English-speaking populations of sarcoidosis patients.

Food residue fatty acid δ13C and δD values as proxies for evaluating cultural and climatic change at Çatalhöyük, Turkey

NASA Astrophysics Data System (ADS)

Pitter, S.; Evershed, R. P.; Hodder, I.

2012-12-01

Compound specific δ13C stable isotope analysis via gas chromatography-combustion-isotope ratio mass spectrometry (GC-C- IRMS) of C16:0 and C18:0 fatty acids from archaeological pottery has been used previously to probe the organic residue record to identify specific animal origins of fats. By following previously established methods (Evershed et al. 2008) a more comprehensive record of the domestic animal-based subsistence practices of the Neolithic site Çatalhöyük has now been established. Furthermore, a new palaeoenvironmental proxy was also established through δD analysis of C16:0 and C18:0 fatty acids using GC-thermal conversion-IRMS (GC-TC-IRMS). This novel approach has demonstrated a means of observing changes in relative humidity associated with specific pottery types at archaeological sites, creating a proxy that may address several limitations in the field of archaeology with regards to understanding links between humans and their changing environments.

Testing item response theory invariance of the standardized Quality-of-life Disease Impact Scale (QDIS(®)) in acute coronary syndrome patients: differential functioning of items and test.

PubMed

Deng, Nina; Anatchkova, Milena D; Waring, Molly E; Han, Kyung T; Ware, John E

2015-08-01

The Quality-of-life (QOL) Disease Impact Scale (QDIS(®)) standardizes the content and scoring of QOL impact attributed to different diseases using item response theory (IRT). This study examined the IRT invariance of the QDIS-standardized IRT parameters in an independent sample. The differential functioning of items and test (DFIT) of a static short-form (QDIS-7) was examined across two independent sources: patients hospitalized for acute coronary syndrome (ACS) in the TRACE-CORE study (N = 1,544) and chronically ill US adults in the QDIS standardization sample. "ACS-specific" IRT item parameters were calibrated and linearly transformed to compare to "standardized" IRT item parameters. Differences in IRT model-expected item, scale and theta scores were examined. The DFIT results were also compared in a standard logistic regression differential item functioning analysis. Item parameters estimated in the ACS sample showed lower discrimination parameters than the standardized discrimination parameters, but only small differences were found for thresholds parameters. In DFIT, results on the non-compensatory differential item functioning index (range 0.005-0.074) were all below the threshold of 0.096. Item differences were further canceled out at the scale level. IRT-based theta scores for ACS patients using standardized and ACS-specific item parameters were highly correlated (r = 0.995, root-mean-square difference = 0.09). Using standardized item parameters, ACS patients scored one-half standard deviation higher (indicating greater QOL impact) compared to chronically ill adults in the standardization sample. The study showed sufficient IRT invariance to warrant the use of standardized IRT scoring of QDIS-7 for studies comparing the QOL impact attributed to acute coronary disease and other chronic conditions.

Risk of Pathologic Upgrading or Locally Advanced Disease in Early Prostate Cancer Patients Based on Biopsy Gleason Score and PSA: A Population-Based Study of Modern Patients

DOE Office of Scientific and Technical Information (OSTI.GOV)

Caster, Joseph M.; Falchook, Aaron D.; Hendrix, Laura H.

Purpose: Radiation oncologists rely on available clinical information (biopsy Gleason score and prostate-specific antigen [PSA]) to determine the optimal treatment regimen for each prostate cancer patient. Existing published nomograms correlating clinical to pathologic extent of disease were based on patients treated in the 1980s and 1990s at select academic institutions. We used the Surveillance, Epidemiology, and End Results (SEER) database to examine pathologic outcomes (Gleason score and cancer stage) in early prostate cancer patients based on biopsy Gleason score and PSA concentration. Methods and Materials: This analysis included 25,858 patients whose cancer was diagnosed between 2010 and 2011, with biopsymore » Gleason scores of 6 to 7 and clinical stage T1 to T2 disease, who underwent radical prostatectomy. In subgroups based on biopsy Gleason score and PSA level, we report the proportion of patients with pathologically advanced disease (positive surgical margin or pT3-T4 disease) or whose Gleason score was upgraded. Logistic regression was used to examine factors associated with pathologic outcomes. Results: For patients with biopsy Gleason score 6 cancers, 84% of those with PSA <10 ng/mL had surgical T2 disease with negative margins; this decreased to 61% in patients with PSA of 20 to 29.9 ng/mL. Gleason score upgrading was seen in 43% (PSA: <10 ng/mL) to 61% (PSA: 20-29.9 ng/mL) of biopsy Gleason 6 patients. Patients with biopsy Gleason 7 cancers had a one-third (Gleason 3 + 4; PSA: <10 ng/mL) to two-thirds (Gleason 4 + 3; PSA: 20-29.9 ng/mL) probability of having pathologically advanced disease. Gleason score upgrading was seen in 11% to 19% of patients with biopsy Gleason 4 + 3 cancers. Multivariable analysis showed that higher PSA and older age were associated with Gleason score upgrading and pathologically advanced disease. Conclusions: This is the first population-based study to examine pathologic extent of disease and pathologic Gleason score upgrading based on clinically available information in modern patients. These data inform the selection of radiation therapy strategies and an understanding of whether prostatectomy alone is likely to be curative for patients with early prostate cancers.« less

Identifying Mendelian disease genes with the Variant Effect Scoring Tool

PubMed Central

2013-01-01

Background Whole exome sequencing studies identify hundreds to thousands of rare protein coding variants of ambiguous significance for human health. Computational tools are needed to accelerate the identification of specific variants and genes that contribute to human disease. Results We have developed the Variant Effect Scoring Tool (VEST), a supervised machine learning-based classifier, to prioritize rare missense variants with likely involvement in human disease. The VEST classifier training set comprised ~ 45,000 disease mutations from the latest Human Gene Mutation Database release and another ~45,000 high frequency (allele frequency >1%) putatively neutral missense variants from the Exome Sequencing Project. VEST outperforms some of the most popular methods for prioritizing missense variants in carefully designed holdout benchmarking experiments (VEST ROC AUC = 0.91, PolyPhen2 ROC AUC = 0.86, SIFT4.0 ROC AUC = 0.84). VEST estimates variant score p-values against a null distribution of VEST scores for neutral variants not included in the VEST training set. These p-values can be aggregated at the gene level across multiple disease exomes to rank genes for probable disease involvement. We tested the ability of an aggregate VEST gene score to identify candidate Mendelian disease genes, based on whole-exome sequencing of a small number of disease cases. We used whole-exome data for two Mendelian disorders for which the causal gene is known. Considering only genes that contained variants in all cases, the VEST gene score ranked dihydroorotate dehydrogenase (DHODH) number 2 of 2253 genes in four cases of Miller syndrome, and myosin-3 (MYH3) number 2 of 2313 genes in three cases of Freeman Sheldon syndrome. Conclusions Our results demonstrate the potential power gain of aggregating bioinformatics variant scores into gene-level scores and the general utility of bioinformatics in assisting the search for disease genes in large-scale exome sequencing studies. VEST is available as a stand-alone software package at http://wiki.chasmsoftware.org and is hosted by the CRAVAT web server at http://www.cravat.us PMID:23819870

An Imaging Biomarker for Assessing Hepatic Function in Patients with Primary Sclerosing Cholangitis.

PubMed

Schulze, Jennifer; Lenzen, Henrike; Hinrichs, Jan B; Ringe, Burckhardt; Manns, Michael P; Wacker, Frank; Ringe, Kristina I

2018-05-15

We aimed to evaluate the potential of hepatobiliary phase magnetic resonance imaging (MRI) as parameter for assessment of hepatocellular function in patients with primary sclerosing cholangitis (PSC). We collected data from 111 patients (83 male, 28 female; median, 44 years old), from March 2012 through March 2016, with a confirmed diagnosis of PSC who underwent MRI evaluation before and after injection (hepatobiliary phase) of a hepatocyte-specific contrast agent (gadoxetate disodium). Signal intensities were measured in each liver segment. Mean relative enhancement values were calculated and correlated with findings from liver functions tests, prognostic scoring systems (model for end-stage liver disease [MELD] score; Mayo risk score; Amsterdam-Oxford-PSC score), abnormalities detected by endoscopic retrograde cholangiopancreatography (using the Amsterdam cholangiographic classification system), and clinical endpoints (liver transplantation, cholangiocarcinoma, liver-related death). Our primary aim was to associate relative enhancement values with liver function and patient outcomes. Most patients had moderate-stage disease and had intermediate levels of risk (median MELD score, 8 and median Mayo score, 0.27). Clinical endpoints were reached by 21 patients (6 developed cholangiocarcinoma, 8 underwent liver transplantation, and 7 patients died). The highest levels of correlations were observed for relative enhancement 20 min after contrast injection and level of alkaline phosphatase (r= -0.636), bilirubin (r= -0.646), albumin (r= 0.538); as well as international normalized ratio (r=0.456); MELD score (r= -0.587); Mayo risk score (r= -0.535), and Amsterdam-Oxford model score (r= -0.595) (P<.0001). Relative enhancement correlated with all clinical endpoints (all P<.05). A cutoff relative enhancement value of 0.65 identified patients with a clinical endpoint with 73.9% sensitivity 92.9% specificity (area under the receiver operating characteristic curve, 0.901; likelihood ratio, 10.34; P<.0001). In an analysis of 111 patients with PSC, we found MRI-measured relative enhancement, using a hepatocyte-specific contrast agent, to identify patients with clinical outcomes with 73.9% sensitivity 92.9% specificity. Long-term, multicenter studies are needed to further evaluate this marker of PSC progression. Copyright © 2018 AGA Institute. Published by Elsevier Inc. All rights reserved.

Munchausen by proxy syndrome mimicking systemic autoinflammatory disease: case report and review of the literature.

PubMed

Wittkowski, Helmut; Hinze, Claas; Häfner-Harms, Sigrid; Oji, Vinzenz; Masjosthusmann, Katja; Monninger, Martina; Grenzebach, Ulrike; Foell, Dirk

2017-04-05

Systemic autoinflammatory diseases (SAIDs) represent a growing number of monogenic, polygenic or multifactorial disorders that are often difficult to diagnose. Here we report a patient who was initially erroneously diagnosed and treated for SAID. Symptoms consisted of recurrent fever, erythematous and/or blistering skin lesions, angioedema, susceptibility to bleeding, external ear infections and reversible anisocoria in the absence of laboratory evidence of systemic inflammation. After two and a half years of extensive diagnostic work-up and multiple empirical therapies, a final diagnosis of Munchausen by proxy syndrome (MBPS) was established. The diagnosis of SAID needs to be carefully reassessed if measurable systemic inflammation is missing, and MBPS should be included in the differential diagnosis.

The comparison of perceived health-related quality of life between Australian children with severe specific language impairment to age and gender-matched peers.

PubMed

Nicola, Kristy; Watter, Pauline

2018-02-14

Children with specific language impairment often present with multiple comorbidities, which may adversely affect both participation in play and academic performance, potentially impacting a child's health-related quality of life. This study 1) explored the suitability of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales (PedsQL™) for use with a typically developing Australian control group, and 2) compared the health-related quality of life between a control group and Australian children with severe specific language impairment. Health-related quality of life data collected as part of a broader study of 43 children with severe specific language impairment (males = 35, age range 5-16, mean age = 8.79+/- 2.92) enrolled at a special school were used to explore previously unreported findings. Typically developing gender and age matched (+/- 3 months) peers were recruited from local schools. The PedsQL™ child self-report and proxy-report were individually or interviewer-administered to the control group as required, and then compared to the group with specific language impairment. The PedsQL™ was reliable and feasible for use with the control group (N = 43, males = 35, age range = 5-16 years, mean age = 8.74+/- 2.94 years). Control group performance was as expected as per the manual. Parents of the control group scored their children significantly higher than did the children themselves on all scales except the emotional functioning scale. Both the control group children and their parents scored themselves significantly higher on all scales, compared to children with severe specific language impairment and their parents. The PedsQL™ was suitable for use with the control group. Further, the recruitment of a control group provided additional clarity on the extent a severe specific language impairment impacts on an Australian child's perceived health-related quality of life, compared to the manual cut-off scores. Severe specific language impairment significantly impacts negatively on the health-related quality of life of Australian children across all domains, particularly when compared to an age and gender-matched group of peers. These results warrant the inclusion of health-related quality of life evaluations in the assessment of these children along with a multidisciplinary approach.

Cranial Suture Closure in Domestic Dog Breeds and Its Relationships to Skull Morphology.

PubMed

Geiger, Madeleine; Haussman, Sinah

2016-04-01

Bulldog-type brachycephalic domestic dog breeds are characterized by a relatively short and broad skull with a dorsally rotated rostrum (airorhynchy). Not much is known about the association between a bulldog-type skull conformation and peculiar patterns of suture and synchondrosis closure in domestic dogs. In this study, we aim to explore breed-specific patterns of cranial suture and synchondrosis closure in relation to the prebasial angle (proxy for airorhynchy and thus bulldog-type skull conformation) in domestic dogs. For this purpose, we coded closure of 18 sutures and synchondroses in 26 wolves, that is, the wild ancestor of all domestic dogs, and 134 domestic dogs comprising 11 breeds. Comparisons of the relative amount of closing and closed sutures and synchondroses (closure scores) in adult individuals showed that bulldog-type breeds have significantly higher closure scores than non-bulldog-type breeds and that domestic dogs have significantly higher closure scores than the wolf. We further found that the prebasial angle is significantly positively correlated with the amount of closure of the basispheno-presphenoid synchondrosis and sutures of the nose (premaxillo-nasal and maxillo-nasal) and the palate (premaxillo-maxillary and interpalatine). Our results show that there is a correlation between patterns of suture and synchondrosis closure and skull shape in domestic dogs, although the causal relationships remain elusive. © 2016 Wiley Periodicals, Inc.

Habitual coffee consumption and cognitive function: a Mendelian randomization meta-analysis in up to 415,530 participants.

PubMed

Zhou, Ang; Taylor, Amy E; Karhunen, Ville; Zhan, Yiqiang; Rovio, Suvi P; Lahti, Jari; Sjögren, Per; Byberg, Liisa; Lyall, Donald M; Auvinen, Juha; Lehtimäki, Terho; Kähönen, Mika; Hutri-Kähönen, Nina; Perälä, Mia Maria; Michaëlsson, Karl; Mahajan, Anubha; Lind, Lars; Power, Chris; Eriksson, Johan G; Raitakari, Olli T; Hägg, Sara; Pedersen, Nancy L; Veijola, Juha; Järvelin, Marjo-Riitta; Munafò, Marcus R; Ingelsson, Erik; Llewellyn, David J; Hyppönen, Elina

2018-05-14

Coffee's long-term effect on cognitive function remains unclear with studies suggesting both benefits and adverse effects. We used Mendelian randomization to investigate the causal relationship between habitual coffee consumption and cognitive function in mid- to later life. This included up to 415,530 participants and 300,760 coffee drinkers from 10 meta-analysed European ancestry cohorts. In each cohort, composite cognitive scores that capture global cognition and memory were computed using available tests. A genetic score derived using CYP1A1/2 (rs2472297) and AHR (rs6968865) was chosen as a proxy for habitual coffee consumption. Null associations were observed when examining the associations of the genetic score with global and memory cognition (β = -0.0007, 95% C.I. -0.009 to 0.008, P = 0.87; β = -0.001, 95% C.I. -0.005 to 0.002, P = 0.51, respectively), with high consistency between studies (P heterogeneity  > 0.4 for both). Domain specific analyses using available cognitive measures in the UK Biobank also did not support effects by habitual coffee intake for reaction time, pairs matching, reasoning or prospective memory (P ≥ 0.05 for all). Despite the power to detect very small effects, our meta-analysis provided no evidence for causal long-term effects of habitual coffee consumption on global cognition or memory.

Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis.

PubMed

Weitzman, Elissa R; Wisk, Lauren E; Salimian, Parissa K; Magane, Kara M; Dedeoglu, Fatma; Hersh, Aimee O; Kimura, Yukiko; Mandl, Kenneth D; Ringold, Sarah; Natter, Marc

2018-01-01

Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics. Patients ( N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p -values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant. For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.

Children with minimal chance for cure: parent proxy of the child's health-related quality of life and the effect on parental physical and mental health during treatment.

PubMed

Mandrell, Belinda N; Baker, Justin; Levine, Deena; Gattuso, Jami; West, Nancy; Sykes, April; Gajjar, Amar; Broniscer, Alberto

2016-09-01

To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.

Head and neck cancer-specific quality of life: instrument validation.

PubMed

Terrell, J E; Nanavati, K A; Esclamado, R M; Bishop, J K; Bradford, C R; Wolf, G T

1997-10-01

The disfigurement and dysfunction associated with head and neck cancer affect emotional well-being and some of the most basic functions of life. Most cancer-specific quality-of-life assessments give a single composite score for head and neck cancer-related quality of life. To develop and evaluate an improved multidimensional instrument to assess head and neck cancer-related functional status and well-being. The item selection process included literature review, interviews with health care workers, and patient surveys. A survey with 37 disease-specific questions and the SF-12 survey were administered to 253 patients in 3 large medical centers. Factor analysis was performed to identify disease-specific domains. Domain scores were calculated as the standardized score of the component items. These domains were assessed for construct validity based on clinical hypotheses and test-retest reliability. Four relevant domains were identified: Eating (6 items), Communication (4 items), Pain (4 items), and Emotion (6 items). Each had an internal consistency (Cronbach alpha value) of greater than 0.80. Construct validity was demonstrated by moderate correlations with the SF-12 Physical and Mental component scores (r=0.43-0.60). Test-retest reliability for each domain demonstrated strong reliability between the 2 time points. Correlations were strong for each individual question, ranging from 0.53 to 0.93. Construct validity testing demonstrated that the direction of differences for each domain were as hypothesized. The Head and Neck Quality of Life questionnaire is a promising multidimensional tool with which to assess head and neck cancer-specific quality of life.

Identification of major cardiovascular events in patients with diabetes using primary care data.

PubMed

Pouwels, Koen Bernardus; Voorham, Jaco; Hak, Eelko; Denig, Petra

2016-04-02

Routine primary care data are increasingly being used for evaluation and research purposes but there are concerns about the completeness and accuracy of diagnoses and events captured in such databases. We evaluated how well patients with major cardiovascular disease (CVD) can be identified using primary care morbidity data and drug prescriptions. The study was conducted using data from 17,230 diabetes patients of the GIANTT database and Dutch Hospital Data register. To estimate the accuracy of the different measures, we analyzed the sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV) relative to hospitalizations and/or records with a diagnosis indicating major CVD, including ischaemic heart diseases and cerebrovascular events. Using primary care morbidity data, 43% of major CVD hospitalizations could be identified. Adding drug prescriptions to the search increased the sensitivity up to 94%. A proxy of at least one prescription of either a platelet aggregation inhibitor, vitamin k antagonist or nitrate could identify 85% of patients with a history of major CVD recorded in primary care, with an NPV of 97%. Using the same proxy, 57% of incident major CVD recorded in primary or hospital care could be identified, with an NPV of 99%. A substantial proportion of major CVD hospitalizations was not recorded in primary care morbidity data. Drug prescriptions can be used in addition to diagnosis codes to identify more patients with major CVD, and also to identify patients without a history of major CVD.

HEDD: Human Enhancer Disease Database

PubMed Central

Wang, Zhen; Zhang, Quanwei; Zhang, Wen; Lin, Jhih-Rong; Cai, Ying; Mitra, Joydeep

2018-01-01

Abstract Enhancers, as specialized genomic cis-regulatory elements, activate transcription of their target genes and play an important role in pathogenesis of many human complex diseases. Despite recent systematic identification of them in the human genome, currently there is an urgent need for comprehensive annotation databases of human enhancers with a focus on their disease connections. In response, we built the Human Enhancer Disease Database (HEDD) to facilitate studies of enhancers and their potential roles in human complex diseases. HEDD currently provides comprehensive genomic information for ∼2.8 million human enhancers identified by ENCODE, FANTOM5 and RoadMap with disease association scores based on enhancer–gene and gene–disease connections. It also provides Web-based analytical tools to visualize enhancer networks and score enhancers given a set of selected genes in a specific gene network. HEDD is freely accessible at http://zdzlab.einstein.yu.edu/1/hedd.php. PMID:29077884

LDlink: a web-based application for exploring population-specific haplotype structure and linking correlated alleles of possible functional variants.

PubMed

Machiela, Mitchell J; Chanock, Stephen J

2015-11-01

Assessing linkage disequilibrium (LD) across ancestral populations is a powerful approach for investigating population-specific genetic structure as well as functionally mapping regions of disease susceptibility. Here, we present LDlink, a web-based collection of bioinformatic modules that query single nucleotide polymorphisms (SNPs) in population groups of interest to generate haplotype tables and interactive plots. Modules are designed with an emphasis on ease of use, query flexibility, and interactive visualization of results. Phase 3 haplotype data from the 1000 Genomes Project are referenced for calculating pairwise metrics of LD, searching for proxies in high LD, and enumerating all observed haplotypes. LDlink is tailored for investigators interested in mapping common and uncommon disease susceptibility loci by focusing on output linking correlated alleles and highlighting putative functional variants. LDlink is a free and publically available web tool which can be accessed at http://analysistools.nci.nih.gov/LDlink/. mitchell.machiela@nih.gov. Published by Oxford University Press 2015. This work is written by US Government employees and is in the public domain in the US.

Positive correlation between inflammation on sacroiliac joint MRI and serum C-terminal telopeptide of type-I collagen in ankylosing spondylitis but not in non-radiographic axial spondyloarthritis.

PubMed

Kang, Kwi Young; Jung, Joon-Yong; Hong, Yeon Sik; Ju, Ji Hyeon; Park, Sung-Hwan

2017-01-01

To identify the clinical disease activity scores and laboratory markers that best reflect magnetic resonance imaging (MRI)-determined sacroiliac joint (SIJ) inflammation in ankylosing spondylitis (AS) and non-radiographic axial spondyloarthritis (nr-axSpA). This cross-sectional study included all consecutive patients who presented with axial spondyloarthritis in 2013-2015. All underwent SIJ MRI. The bone marrow oedema in the inflammatory lesions on MRI was scored using the SPondyloArthritis Research Consortium of Canada (SPARCC) method. Bone-specific alkaline phosphatase (BALP), serum C-terminal telopeptide of type-I collagen (sCTX-I), and inflammatory markers were measured. Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) and Ankylosing Spondylitis Disease Activity Score (ASDAS) were assessed. The correlations between the MRI-determined SIJ inflammation scores and disease activity scores and laboratory variables were evaluated. Of the 81 patients with axSpA, 45 had AS and 36 had nr-axSpA. The AS and nr-axSpA groups did not differ in terms of disease activity scores, physical functional index, or MRI-determined SIJ inflammation. Erythrocyte sedimentation rate, C-reactive protein, and ASDAS correlated with MRI inflammatory scores in nr-axSpA but not in AS. sCTX-I correlated with MRI-determined SIJ inflammatory scores in AS only. BASDAI and BALP levels did not associate with MRI inflammatory scores in either group. Multivariate analysis showed that sCTX-I associated independently with MRI inflammatory score in AS (β=17.047, p=0.038). Inflammatory markers and ASDAS correlated with active sacroiliitis on MRI in nr-axSpA only. In AS, only sCTX-I correlated with active inflammation on SIJ MRI. sCTX-I may be useful as a marker of objective inflammation in AS.

Usefulness of the Montreal Cognitive Assessment (MoCA) in Huntington's disease.

PubMed

Gluhm, Shea; Goldstein, Jody; Brown, Daniel; Van Liew, Charles; Gilbert, Paul E; Corey-Bloom, Jody

2013-10-01

The Montreal Cognitive Assessment (MoCA) is a brief screening instrument for dementia that is sensitive to executive dysfunction. This study examined its usefulness for assessing cognitive performance in mild, moderate, and severe Huntington's disease (HD), compared with the use of the Mini-Mental State Examination (MMSE). We compared MoCA and MMSE total scores and the number of correct answers in 5 cognitive-specific domains in 104 manifest HD patients and 100 matched controls. For the total HD sample, and for the moderate and severe patients, significant differences between both MoCA and MMSE total scores and almost all cognitive-specific domains emerged. Even mild HD subjects showed significant differences with regard to total score and several cognitive domains on both instruments. We conclude that the MoCA, although not necessarily superior to the MMSE, is a useful instrument for assessing cognitive performance over a broad level of functioning in HD. © 2013 Movement Disorder Society.

Performance of Disease-Specific Scoring Models in Intensive Care Patients with Severe Liver Diseases.

PubMed

El-Ghannam, Maged T; Hassanien, Moataz H; El-Talkawy, Mohamed D; Saleem, Abdel Aziz A; Sabry, Amal I; Abu Taleb, Hoda M

2017-06-01

Egypt has the highest prevalence of Hepatitis C Virus (HCV) in the world, estimated nationally at 14.7%. HCV treatment consumes 20% ($80 million) of Egypt's annual health budget. Outcomes of cirrhotic patients admitted to the ICU may, in fact, largely depend on differences in the state of the disease, criteria and indications for admission, resource utilization, and intensity of treatment. The aim of the present study was to evaluate the efficacy of liver specific scoring models in predicting the outcome of critically ill cirrhotic patients in the ICU as it may help in prioritization of high risk patients and preservation of ICU resources. Over one year, a total of 777 patients with End Stage Liver Disease (ESLD) due to HCV infection were included in this retrospective non-randomized human study. All statistical analyses were performed by the statistical software SPSS version 22.0 (SPSS, Chicago, IL, USA). Child Turcotte Pugh (CTP) score, MELD score, MELD-Na, MESO, iMELD, Refit MELD and Refit MELD-Na were calculated on ICU admission. ICU admission was mainly due to Gastrointestinal (GI) bleeding and Hepatic Encephalopathy (HE). Overall mortality was 27%. Age and sex showed no statistical difference between survivors and non survivors. Significantly higher mean values were observed for all models among individuals who died compared to survivors. MELD-Na was the most specific compared to the other scores. MELD-Na was highly predictive of mortality at an optimized cut-off value of 20.4 (AURC=0.789±0.03-CI 95%=0.711-0.865) while original MELD was highly predictive of mortality at an optimized cut-off value of 17.4 (AURC=0.678±0.01-CI 95%=0.613-0.682) denoting the importance of adding serum sodium to the original MELD. INR, serum creatinine, bilirubin, white blood cells count and hyponatremia were significantly higher in non survivors compared to survivors, while hypoalbuminemia showed no statistical difference. The advent of Hepatorenal Syndrome (HRS) and Spontaneous Bacterial Peritonitis (SBP) carried worse prognosis. Hyponatremia and number of transfused blood bags were additional independent predictors of mortality. In cirrhosis of liver, due to HCV infection, patients who died during their ICU stay displayed significantly higher values on all prognostic scores at admission. The addition of sodium to MELD score greatly improves the predictive accuracy of mortality. MELD-Na showed the highest predictive value of all scores.

Urinary Proteomic Biomarkers for Diagnosis and Risk Stratification of Autosomal Dominant Polycystic Kidney Disease: A Multicentric Study

PubMed Central

Kistler, Andreas D.; Serra, Andreas L.; Siwy, Justyna; Poster, Diane; Krauer, Fabienne; Torres, Vicente E.; Mrug, Michal; Grantham, Jared J.; Bae, Kyongtae T.; Bost, James E.; Mullen, William; Wüthrich, Rudolf P.; Mischak, Harald; Chapman, Arlene B.

2013-01-01

Treatment options for autosomal dominant polycystic kidney disease (ADPKD) will likely become available in the near future, hence reliable diagnostic and prognostic biomarkers for the disease are strongly needed. Here, we aimed to define urinary proteomic patterns in ADPKD patients, which aid diagnosis and risk stratification. By capillary electrophoresis online coupled to mass spectrometry (CE-MS), we compared the urinary peptidome of 41 ADPKD patients to 189 healthy controls and identified 657 peptides with significantly altered excretion, of which 209 could be sequenced using tandem mass spectrometry. A support-vector-machine based diagnostic biomarker model based on the 142 most consistent peptide markers achieved a diagnostic sensitivity of 84.5% and specificity of 94.2% in an independent validation cohort, consisting of 251 ADPKD patients from five different centers and 86 healthy controls. The proteomic alterations in ADPKD included, but were not limited to markers previously associated with acute kidney injury (AKI). The diagnostic biomarker model was highly specific for ADPKD when tested in a cohort consisting of 481 patients with a variety of renal and extrarenal diseases, including AKI. Similar to ultrasound, sensitivity and specificity of the diagnostic score depended on patient age and genotype. We were furthermore able to identify biomarkers for disease severity and progression. A proteomic severity score was developed to predict height adjusted total kidney volume (htTKV) based on proteomic analysis of 134 ADPKD patients and showed a correlation of r = 0.415 (p<0.0001) with htTKV in an independent validation cohort consisting of 158 ADPKD patients. In conclusion, the performance of peptidomic biomarker scores is superior to any other biochemical markers of ADPKD and the proteomic biomarker patterns are a promising tool for prognostic evaluation of ADPKD. PMID:23326375

Diversity in mental fatigue and social profile of patients with myasthenia gravis in two different Northern European countries.

PubMed

Sabre, Liis; Westerberg, Elisabet; Liik, Maarika; Punga, Anna R

2017-04-01

Self-estimated health can be used for comparison of different diseases between countries. It is important to elaborate on whether disparities in self-estimated health are due to disease-specific parameters or socioeconomic differences. In this study, we aimed at evaluating clinical and social similarities and differences in myasthenia gravis (MG) patients between comparable regions in two Baltic Sea countries, Estonia and Sweden. This cross-sectional study included southern counties in Sweden and Estonia of comparable size. All patients with a confirmed MG diagnosis were asked to answer two questionnaires including demographic and disease-specific data, lifestyle issues, and mental fatigue (Fatigue Severity Scale [FSS]). Clinical fatigue was assessed objectively through the Quantitative Myasthenia Gravis Score (QMG). Thirty-six of 92 identified patients in Estonia and 40 of 70 identified MG patients in Sweden chose to participate in the study. The demographic characteristics and symptoms reported by the patients were similar. QMG score did not differ; however, the Estonian patients scored their current subjective disease severity significantly higher (5.6 ± 2.8) compared to the Swedish patients (3.4 ± 2.3, p  = .0005). Estonian patients also had significantly higher FSS scores (5.0 ± 1.7) than Swedish patients (3.5 ± 1.6; p  = .001). Swedish patients were more active and performed physical activity more regularly (29.1% in Estonia and 74.2% in Sweden, p  = .004). Although, the patients had comparable clinical fatigue, Estonian patients evaluated their health state as being more severe and reported more mental fatigue than Swedish patients. These data indicate large regional differences in disease perception of MG, which is important to consider in international studies.

Research Options for Controlling Zoonotic Disease in India, 2010–2015

PubMed Central

Sekar, Nitin; Shah, Naman K.; Abbas, Syed Shahid; Kakkar, Manish

2011-01-01

Background Zoonotic infections pose a significant public health challenge for low- and middle-income countries and have traditionally been a neglected area of research. The Roadmap to Combat Zoonoses in India (RCZI) initiative conducted an exercise to systematically identify and prioritize research options needed to control zoonoses in India. Methods and Findings Priority setting methods developed by the Child Health and Nutrition Research Initiative were adapted for the diversity of sectors, disciplines, diseases and populations relevant for zoonoses in India. A multidisciplinary group of experts identified priority zoonotic diseases and knowledge gaps and proposed research options to address key knowledge gaps within the next five years. Each option was scored using predefined criteria by another group of experts. The scores were weighted using relative ranks among the criteria based upon the feedback of a larger reference group. We categorized each research option by type of research, disease targeted, factorials, and level of collaboration required. We analysed the research options by tabulating them along these categories. Seventeen experts generated four universal research themes and 103 specific research options, the majority of which required a high to medium level of collaboration across sectors. Research options designated as pertaining to ‘social, political and economic’ factorials predominated and scored higher than options focussing on ecological, genetic and biological, or environmental factors. Research options related to ‘health policy and systems’ scored highest while those related to ‘research for development of new interventions’ scored the lowest. Conclusions We methodically identified research themes and specific research options incorporating perspectives of a diverse group of stakeholders. These outputs reflect the diverse nature of challenges posed by zoonoses and should be acceptable across diseases, disciplines, and sectors. The identified research options capture the need for ‘actionable research’ for advancing the prevention and control of zoonoses in India. PMID:21364879

Assessment of Health-Related Quality of Life after TBI: Comparison of a Disease-Specific (QOLIBRI) with a Generic (SF-36) Instrument

PubMed Central

von Steinbuechel, Nicole; Covic, Amra; Polinder, Suzanne; Kohlmann, Thomas; Cepulyte, Ugne; Poinstingl, Herbert; Backhaus, Joy; Bakx, Wilbert; Bullinger, Monika; Christensen, Anne-Lise; Formisano, Rita; Gibbons, Henning; Höfer, Stefan; Koskinen, Sanna; Maas, Andrew; Neugebauer, Edmund; Powell, Jane; Sarajuuri, Jaana; Sasse, Nadine; Schmidt, Silke; Mühlan, Holger; von Wild, Klaus; Zitnay, George; Truelle, Jean-Luc

2016-01-01

Psychosocial, emotional, and physical problems can emerge after traumatic brain injury (TBI), potentially impacting health-related quality of life (HRQoL). Until now, however, neither the discriminatory power of disease-specific (QOLIBRI) and generic (SF-36) HRQoL nor their correlates have been compared in detail. These aspects as well as some psychometric item characteristics were studied in a sample of 795 TBI survivors. The Shannon H ' index absolute informativity, as an indicator of an instrument's power to differentiate between individuals within a specific group or health state, was investigated. Psychometric performance of the two instruments was predominantly good, generally higher, and more homogenous for the QOLIBRI than for the SF-36 subscales. Notably, the SF-36 “Role Physical,” “Role Emotional,” and “Social Functioning” subscales showed less satisfactory discriminatory power than all other dimensions or the sum scores of both instruments. The absolute informativity of disease-specific as well as generic HRQoL instruments concerning the different groups defined by different correlates differed significantly. When the focus is on how a certain subscale or sum score differentiates between individuals in one specific dimension/health state, the QOLIBRI can be recommended as the preferable instrument. PMID:27022207

Pediatric trauma BIG score: Predicting mortality in polytraumatized pediatric patients.

PubMed

El-Gamasy, Mohamed Abd El-Aziz; Elezz, Ahmed Abd El Basset Abo; Basuni, Ahmed Sobhy Mohamed; Elrazek, Mohamed El Sayed Ali Abd

2016-11-01

Trauma is a worldwide health problem and the major cause of death and disability, particularly affecting the young population. It is important to remember that pediatric trauma care has made a significant improvement in the outcomes of these injured children. This study aimed at evaluation of pediatric trauma BIG score in comparison with New Injury Severity Score (NISS) and Pediatric Trauma Score (PTS) in Tanta University Emergency Hospital. The study was conducted in Tanta University Emergency Hospital to all multiple trauma pediatric patients attended to the Emergency Department for 1 year. Pediatric trauma BIG score, PTS, and NISS scores were calculated and results compared to each other and to observed mortality. BIG score ≥12.7 has sensitivity 86.7% and specificity 71.4%, whereas PTS at value ≤3.5 has sensitivity 63.3% and specificity 68.6% and NISS at value ≥39.5 has sensitivity 53.3% and specificity 54.3%. There was a significant positive correlation between BIG score value and mortality rate. The pediatric BIG score is a reliable mortality-prediction score for children with traumatic injuries; it uses international normalization ratio (INR), Base Excess (BE), and Glasgow Coma Scale (GCS) values that can be measured within a few minutes of sampling, so it can be readily applied in the Pediatric Emergency Department, but it cannot be applied on patients with chronic diseases that affect INR, BE, or GCS.

Validation of prognostic scores to predict short-term mortality in patients with acute-on-chronic liver failure.

PubMed

Song, Do Seon; Kim, Tae Yeob; Kim, Dong Joon; Kim, Hee Yeon; Sinn, Dong Hyun; Yoon, Eileen L; Kim, Chang Wook; Jung, Young Kul; Suk, Ki Tae; Lee, Sang Soo; Lee, Chang Hyeong; Kim, Tae Hun; Choe, Won Hyeok; Yim, Hyung Joon; Kim, Sung Eun; Baik, Soon Koo; Jang, Jae Young; Kim, Hyoung Su; Kim, Sang Gyune; Yang, Jin Mo; Sohn, Joo Hyun; Choi, Eun Hee; Cho, Hyun Chin; Jeong, Soung Won; Kim, Moon Young

2018-04-01

The aim of this study was to validate the chronic liver failure-sequential organ failure assessment score (CLIF-SOFAs), CLIF consortium organ failure score (CLIF-C OFs), CLIF-C acute-on-chronic liver failure score (CLIF-C ACLFs), and CLIF-C acute decompensation score in Korean chronic liver disease patients with acute deterioration. Acute-on-chronic liver failure was defined by either the Asian Pacific Association for the study of the Liver ACLF Research Consortium (AARC) or CLIF-C criteria. The diagnostic performances for short-term mortality were compared by the area under the receiver operating characteristic curve. Among a total of 1470 patients, 252 patients were diagnosed with ACLF according to the CLIF-C (197 patients) or AARC definition (95 patients). As the ACLF grades increased, the survival rates became significantly lower. The areas under the receiver operating characteristic of the CLIF-SOFAs, CLIF-C OFs, and CLIF-C ACLFs were significantly higher than those of the Child-Pugh, model for end-stage liver disease, and model for end-stage liver disease-Na scores in ACLF patients according to the CLIF-C definition (all P < 0.05), but there were no significant differences in patients without ACLF or in patients with ACLF according to the AARC definition. The CLIF-SOFAs, CLIF-C OFs, and CLIF-C ACLFs had higher specificities with a fixed sensitivity than liver specific scores in ACLF patients according to the CLIF-C definition, but not in ACLF patients according to the AARC definition. The CLIF-SOFAs, CLIF-C OFs, and CLIF-C ACLFs are useful scoring systems that provide accurate information on prognosis in patients with ACLF according to the CLIF-C definition, but not the AARC definition. © 2017 Journal of Gastroenterology and Hepatology Foundation and John Wiley & Sons Australia, Ltd.

Differential Scavenging Among Pig, Rabbit, and Human Subjects.

PubMed

Steadman, Dawnie Wolfe; Dautartas, Angela; Kenyhercz, Michael W; Jantz, Lee M; Mundorff, Amy; Vidoli, Giovanna M

2018-04-12

Different animal species have been used as proxies for human remains in decomposition studies for decades, although few studies have sought to validate their use in research aimed at estimating the postmortem interval. This study examines 45 pig, rabbit, and human subjects placed in three seasonal trials at the Anthropology Research Facility. In an earlier paper, we found that overall decomposition trends did vary between species that could be due to differential insect and scavenger behavior. This study specifically examines if scavenger behavior differs by carrion species. Daily photographs, game camera photographs, written observations, and Total Body Score (TBS) documented scavenging and decomposition changes. Results show that raccoons were the most commonly observed vertebrate scavenger, that scavenging was most extensive in winter, and that certain human subjects were preferred over other humans and all non-human subjects. Finally, scavenging activity greatly reduces the accuracy of postmortem interval estimates based on TBS. © 2018 American Academy of Forensic Sciences.

Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales.

PubMed

Cremeens, Joanne; Eiser, Christine; Blades, Mark

2006-08-30

In situations where children are unable or unwilling to respond for themselves, measurement of quality of life (QOL) is often obtained by parent proxy-report. However the relationship between child self and parent proxy-reports has been shown to be poor in some circumstances. Additionally the most appropriate statistical method for comparing ratings between child and parent proxy-reports has not been clearly established. The objectives of this study were to assess the: 1) agreement between child and parent proxy-reports on an established child QOL measure (the PedsQL) using two different statistical methods; 2) effect of chronological age and domain type on agreement between children's and parents' reports on the PedsQL; 3) relationship between parents' own well-being and their ratings of their child's QOL. One hundred and forty-nine healthy children (5.5 - 6.5, 6.5 - 7.5, and 7.5 - 8.5 years) completed the PedsQL. One hundred and three of their parents completed these measures in relation to their child, and a measure of their own QOL (SF-36). Consistency between child and parent proxy-reports on the PedsQL was low, with Intra-Class correlation coefficients ranging from 0.02 to 0.23. Correlations were higher for the oldest age group for Total Score and Psychosocial Health domains, and for the Physical Health domain in the youngest age group. Statistically significant median differences were found between child and parent-reports on all subscales of the PedsQL. The largest median differences were found for the two older age groups. Statistically significant correlations were found between parents' own QOL and their proxy-reports of child QOL across the total sample and within the middle age group. Intra-Class correlation coefficients and median difference testing can provide different information on the relationship between parent proxy-reports and child self-reports. Our findings suggest that differences in the levels of parent-child agreement previously reported may be an artefact of the statistical method used. In addition, levels of agreement can be affected by child age, domains investigated, and parents' own QOL. Further studies are needed to establish the optimal predictors of levels of parent-child agreement.

Health-related quality of life in pediatric patients with long-standing pancreatitis.

PubMed

Pohl, John F; Limbers, Christine A; Kay, Marie; Harman, Annette; Rollins, Michael; Varni, James W

2012-05-01

There are limited data on health-related quality of life (HRQOL) in pediatric patients with long-standing pancreatitis (including acute relapsing and chronic pancreatitis) using age-appropriate measurement instruments. We evaluated HRQOL in children with long-standing pancreatitis using the PedsQL 4.0 Generic Core Scales by patient self-report as well as parent proxy report. Additionally, patient self-reports and parent proxy reports were completed for the PedsQL Multidimensional Fatigue Scale. Across all of the dimensions, significantly impaired HRQOL and higher fatigue were noted for both pediatric patient self-report and parent proxy report in comparison with the matched healthy children samples. Higher fatigue was associated with lower HRQOL. There was moderate to good agreement between patient self-reports and parent proxy reports. Given the impaired HRQOL and fatigue documented in the present study, future studies are needed to determine whether specific factors can modify HRQOL and fatigue in this patient population.

Measuring the quality of life in mild to very severe dementia: testing the inter-rater and intra-rater reliability of the German version of the QUALIDEM.

PubMed

Dichter, Martin Nikolaus; Schwab, Christian G G; Meyer, Gabriele; Bartholomeyczik, Sabine; Dortmann, Olga; Halek, Margareta

2014-05-01

Quality of life (Qol) is an increasingly used outcome measure in dementia research. The QUALIDEM is a dementia-specific and proxy-rated Qol instrument. We aimed to determine the inter-rater and intra-rater reliability in residents with dementia in German nursing homes. The QUALIDEM consists of nine subscales that were applied to a sample of 108 people with mild to severe dementia and six consecutive subscales that were applied to a sample of 53 people with very severe dementia. The proxy raters were 49 registered nurses and nursing assistants. Inter-rater and intra-rater reliability scores were calculated on the subscale and item level. None of the QUALIDEM subscales showed strong inter-rater reliability based on the single-measure Intra-Class Correlation Coefficient (ICC) for absolute agreement ≥ 0.70. Based on the average-measure ICC for four raters, eight subscales for people with mild to severe dementia (care relationship, positive affect, negative affect, restless tense behavior, social relations, social isolation, feeling at home and having something to do) and five subscales for very severe dementia (care relationship, negative affect, restless tense behavior, social relations and social isolation) yielded a strong inter-rater agreement (ICC: 0.72-0.86). All of the QUALIDEM subscales, regardless of dementia severity, showed strong intra-rater agreement. The ICC values ranged between 0.70 and 0.79 for people with mild to severe dementia and between 0.75 and 0.87 for people with very severe dementia. This study demonstrated insufficient inter-rater reliability and sufficient intra-rater reliability for all subscales of both versions of the German QUALIDEM. The degree of inter-rater reliability can be improved by collaborative Qol rating by more than one nurse. The development of a measurement manual with accurate item definitions and a standardized education program for proxy raters is recommended.

Olfactory-specific quality of life outcomes after endoscopic sinus surgery

PubMed Central

Soler, Zachary M.; Smith, Timothy L.; Alt, Jeremiah A.; Ramakrishnan, Vijay R; Mace, Jess C.; Schlosser, Rodney J.

2015-01-01

Introduction Olfactory loss is a cardinal symptom of chronic rhinosinusitis (CRS) and affects 40–80% of patients. However, common sinus-specific quality-of-life (QOL) instruments include only single questions related to olfaction. Few studies have explored olfactory outcomes after surgery utilizing validated, olfaction-specific QOL questionnaires. Methods Patients with CRS were enrolled from 3 centers across North America into a prospective cohort study. Patients completed the short modified version of the Questionnaire of Olfactory Disorders (QOD-NS) and the 40-item Smell Identification Test (SIT-40) before and at least 6 months after endoscopic sinus surgery (ESS). Multivariate linear regression was used to determine whether specific demographic, comorbidity, or disease severity measures were independently associated with QOD scores at baseline or predicted change after surgery. Results A total of 121 patients, equally split between genders, were enrolled with an average age of 47.9 years (range: 18–80). Baseline total QOD-NS scores were significantly associated with SIT-40 scores, with a moderate strength of correlation (Rs=0.400; p<0.001). The average QOD-NS score improved after ESS (35.7±13.0 vs. 39.7±12.2; p=0.006). Allergy, polyps, and steroid dependent conditions were found to be independently associated with worse preoprerative QOD-NS scores, while septal deviation was associated with better QOD-NS scores. Baseline computed tomography (CT) scores were the only variable which significantly predicted change in QOD-NS after surgery. Conclusion Olfaction-specific QOL is worse in patients with polyps and comorbid allergy. Significant improvements in olfaction-specific QOL are seen after ESS, with the greatest gains seen in those with worse CT scores at baseline. PMID:26678351

High FIB-4 index as an independent risk factor of prevalent chronic kidney disease in patients with nonalcoholic fatty liver disease.

PubMed

Xu, Huang-Wei; Hsu, Yung-Chien; Chang, Chia-Hao; Wei, Kuo-Liang; Lin, Chun-Liang

2016-03-01

Growing evidence suggests that non-alcoholic fatty liver disease (NAFLD) is linked to an increased risk for chronic kidney disease (CKD); liver fibrosis with biopsy-proven NAFLD has also been shown to associate with an increased risk of CKD. This study compares the diagnostic performance of simple noninvasive tests in identifying prevalent CKD among individuals with ultrasonography-diagnosed NAFLD. A total of 755 with ultrasonography-diagnosed NAFLD were included. Estimated glomerular filtration rate and noninvasive markers for hepatic fibrosis: aspartate transaminase to alanine transaminase ratio (AAR), aspartate transaminase to platelet ratio index (APRI), FIB-4 score, NAFLD fibrosis score (NFS) and BARD score were assessed. Binary logistic regression to generate a propensity score and receiver operating characteristic curves were developed for each of the noninvasive markers for predicting CKD, and the area under the receiver operating characteristic curve was greatest for FIB-4 score (0.750), followed by NFS (0.710), AAR (0.594), APRI (0.587), and BARD score (0.561). A cut-off value of 1.100 for FIB-4 score gave a sensitivity of 68.85% and a specificity of 71.07% for predicting CKD. The positive predictive value and negative predictive value were 37.50 and 90.05%, respectively. In multiple logistic regression analysis, only FIB-4 score ≧1.100 (OR 2.660, 95% CI 1.201-5.889; p = .016), older age, higher diastolic blood pressure and higher uric acid were independent predictors of CKD. High noninvasive fibrosis score is associated with an increased risk of prevalent CKD; the FIB-4 is the better predictor. With a cut-off value of 1.100 for FIB-4, it is useful in excluding the presence of CKD in patients with NAFLD.

Adolescent self-report and parent proxy-report of health-related quality of life: an analysis of validity and reliability of PedsQL 4.0 among a sample of Malaysian adolescents and their parents.

PubMed

Kaartina, Sanker; Chin, Yit Siew; Fara Wahida, Rezali; Woon, Fui Chee; Hiew, Chu Chien; Zalilah, Mohd Shariff; Mohd Nasir, Mohd Taib

2015-04-08

The Pediatric Quality of Life Inventory Generic Core Scales (PedsQL) 4.0 is a generalized assessment of health-related quality of life (HRQoL) based on adolescent self-report and parent proxy-report. This study aims to determine the construct validity and reliability of PedsQL 4.0 among a sample of Malaysian adolescents and parents. A cross-sectional study was carried out at three selected public schools in the state of Selangor. A total of 379 Malaysian adolescents completed the PedsQL 4.0 adolescent self-report and 218 (55.9%) parents completed the PedsQL 4.0 parent proxy-report. Weight and height of adolescents were measured and BMI-for-age by sex was used to determine their body weight status. There were 50.8% male and 49.2% female adolescents who participated in this study (14.25 ± 1.23 years). The prevalence of overweight and obesity (25.8%) was four times higher than the prevalence of severe thinness and thinness (6.1%). Construct validity was analyzed using Confirmatory Factor Analysis (CFA). Based on CFA, adolescent self-report and parent proxy-report met the criteria of convergent validity (factor loading > 0.5, Average Variance Extracted (AVE) > 0.5, Construct Reliability > 0.7) and showed good fit to the data. The adolescent self-report and parent proxy-report exhibited discriminant validity as the AVE values were larger than the R(2) values. Cronbach's alpha coefficients of the adolescent self-report (α = 0.862) and parent proxy-report (α = 0.922) showed these instruments are reliable. Parents perceived the HRQoL of adolescents was poorer compared to the perception of the adolescent themselves (t = 5.92, p < 0.01). There was no significant difference in total HRQoL score between male and female adolescents (t = 0.858, p > 0.05). Parent proxy-report was negatively associated with the adolescents' BMI-for-age (r = -0.152, p < 0.05) whereas no significant association was found between adolescent self-report and BMI-for-age (r = 0.001, p > 0.05). Adolescent self-report and parent proxy-report of the PedsQL 4.0 are valid and reliable to assess HRQoL of Malaysian adolescents. Future studies are recommended to use both adolescent self-report and parent-proxy report of HRQoL as adolescents and parents can provide different perspectives on HRQoL of adolescents.

Clinical validity of a disease-specific health status questionnaire: the peripheral artery questionnaire.

PubMed

Hoeks, Sanne E; Smolderen, Kim G; Scholte Op Reimer, Wilma J M; Verhagen, Hence J M; Spertus, John A; Poldermans, Don

2009-02-01

Measuring patient-centered outcomes is becoming increasingly important in patients with peripheral arterial disease (PAD), both as a means of determining the benefits of treatment and as an aid for disease management. In order to monitor health status in a reliable and sensitive way, the disease-specific measure Peripheral Artery Questionnaire (PAQ) was developed. However, to date, its correlation with traditional clinical indices is unknown. The primary aim of this study was to better establish the clinical validity of the PAQ by examining its association with functional indices related to PAD. Furthermore, we hypothesized that the clinical validity of this disease-specific measure is better as compared with the EuroQol-5-dimensional (EQ-5D), a standardized generic instrument. Data on 711 consecutive PAD patients undergoing surgery were collected from 11 Dutch hospitals in 2004. At 3-year follow-up, questionnaires including the PAQ, EQ-5D, and EuroQol-Visual Analogue Scale (EQ VAS) were completed in 84% of survivors. The PAQ was analyzed according to three domains, as established by a factor analyses in the Dutch population, and the summary score. Baseline clinical indices included the presence and severity of claudication intermittent (CI) and the Lee Cardiac Risk Index. All three PAQ domains (Physical Function, Perceived Disability, and Treatment Satisfaction) were significantly associated with CI symptoms (P values < .001-.008). Patients with claudication had significant lower PAQ summary scores as compared with asymptomatic patients (58.6 +/- 27.8 vs 68.6 +/- 27.8, P = < .001). Furthermore, the PAQ summary score and the subscale scores for Physical Functioning and Perceived Disability demonstrated a clear dose-response relation for walking distance and the Lee Risk Index (P values < .001-.031). With respect to the generic EQ-5D, the summary EQ-5D index was associated with CI (0.81 +/- 0.20 vs 0.76 +/- 0.24, P = .031) but not with walking distance (P = .128) nor the Lee Risk Index (P = .154). The EQ VAS discriminated between the clinical indices (P values = .003-.008), although a clear dose-response relation was lacking. The clinical validity of the PAQ proved to be good as the PAQ subscales discriminated well between patients with or without symptomatic PAD and its severity as defined by walking distance. Furthermore, the PAQ subscales were directly proportional to the presence and number of risk factors relevant for PAD. For studying outcomes in PAD patients, the disease-specific PAQ is likely to be a more sensitive measure of treatment benefit as compared with the generic EQ VAS, although the latter may still be of value when comparing health status across different diseases. Regarding disease management, we advocate the use of the disease-specific PAQ as its greater sensitivity and validity will assist its translation into clinical practice.

Comparison of the Belgian Rheumatoid Arthritis Disability Assessment and Health Assessment Questionnaires as Tools to Predict the Need for Support Measures in Patients with Rheumatoid Arthritis

PubMed Central

Janssens, Xavier; Decuman, Saskia; De Keyser, Filip

2016-01-01

Objective Scores on the Health Assessment Questionnaire (HAQ) predict the need for support measures in patients with rheumatoid arthritis (RA). In this study we compare the performance of the HAQ in this context with that of the more disease-specific Belgian Rheumatoid Arthritis Disability Assessment (BRADA) questionnaire. Methods In this multicenter observational study, patients with RA and disease duration of at least one year who consulted their rheumatologist for a routine follow-up visit filled out the HAQ, and BRADA questionnaires. The performance of HAQ and BRADA to predict the need for support measures available to patients with RA was evaluated using Receiver Operator Characteristic (ROC) curves, with the expert opinion of the rheumatologist as a reference. Results The study analyzed data of 301 patients with RA (70.8% females) with mean age 59.8±12.8, disease duration 11.4±9.3 years, and DAS28 values of 2.84±1.18. HAQ scores averaged 0.97±0.73 and BRADA scores were 3.92±3.49 over the last week and 3.89±3.50 over the last 3 months. The area under the ROC curves for the BRADA scores for the support measures investigated ranged from 0.702 to 0.862 and did not differ significantly from those of the HAQ (range 0.725–0.860). Conclusion The disease-specific BRADA questionnaire is equivalent to the HAQ in predicting the need for support measures in patients with stable RA. PMID:26800345

Comparison of the Belgian Rheumatoid Arthritis Disability Assessment and Health Assessment Questionnaires as Tools to Predict the Need for Support Measures in Patients with Rheumatoid Arthritis.

PubMed

Janssens, Xavier; Decuman, Saskia; De Keyser, Filip

2016-01-01

Scores on the Health Assessment Questionnaire (HAQ) predict the need for support measures in patients with rheumatoid arthritis (RA). In this study we compare the performance of the HAQ in this context with that of the more disease-specific Belgian Rheumatoid Arthritis Disability Assessment (BRADA) questionnaire. In this multicenter observational study, patients with RA and disease duration of at least one year who consulted their rheumatologist for a routine follow-up visit filled out the HAQ, and BRADA questionnaires. The performance of HAQ and BRADA to predict the need for support measures available to patients with RA was evaluated using Receiver Operator Characteristic (ROC) curves, with the expert opinion of the rheumatologist as a reference. The study analyzed data of 301 patients with RA (70.8% females) with mean age 59.8 ± 12.8, disease duration 11.4 ± 9.3 years, and DAS28 values of 2.84 ± 1.18. HAQ scores averaged 0.97 ± 0.73 and BRADA scores were 3.92 ± 3.49 over the last week and 3.89 ± 3.50 over the last 3 months. The area under the ROC curves for the BRADA scores for the support measures investigated ranged from 0.702 to 0.862 and did not differ significantly from those of the HAQ (range 0.725-0.860). The disease-specific BRADA questionnaire is equivalent to the HAQ in predicting the need for support measures in patients with stable RA.

Quality-of-Life Impairments Persist Six Months After Treatment of Graves' Hyperthyroidism and Toxic Nodular Goiter: A Prospective Cohort Study.

PubMed

Cramon, Per; Winther, Kristian Hillert; Watt, Torquil; Bonnema, Steen Joop; Bjorner, Jakob Bue; Ekholm, Ola; Groenvold, Mogens; Hegedüs, Laszlo; Feldt-Rasmussen, Ulla; Rasmussen, Åse Krogh

2016-08-01

The treatment of hyperthyroidism is aimed at improving health-related quality of life (HRQoL) and reducing morbidity and mortality. However, few studies have used validated questionnaires to assess HRQoL prospectively in such patients. The purpose of this study was to assess the impact of hyperthyroidism and its treatment on HRQoL using validated disease-specific and generic questionnaires. This prospective cohort study enrolled 88 patients with Graves' hyperthyroidism and 68 with toxic nodular goiter from endocrine outpatient clinics at two Danish university hospitals. The patients were treated with antithyroid drugs, radioactive iodine, or surgery. Disease-specific and generic HRQoL were assessed using the thyroid-related patient-reported outcome (ThyPRO) and the Medical Outcomes Study 36-item Short Form (SF-36), respectively, evaluated at baseline and six-month follow-up. The scores were compared with those from two general population samples who completed ThyPRO (n = 739) and SF-36 (n = 6638). Baseline scores for patients with Graves' hyperthyroidism and toxic nodular goiter were significantly worse than those for the general population scores on all comparable ThyPRO scales and all SF-36 scales and component summaries. ThyPRO scores improved significantly with treatment on all scales in Graves' hyperthyroidism and four scales in toxic nodular goiter, while SF-36 scores improved on five scales and both component summaries in Graves' hyperthyroidism and only one scale in toxic nodular goiter. In Graves' hyperthyroidism, large treatment effects were observed on three ThyPRO scales (Hyperthyroid Symptoms, Tiredness, Overall HRQoL) and moderate effects on three scales (Anxiety, Emotional Susceptibility, Impaired Daily Life), while moderate effects were seen in two ThyPRO scales in toxic nodular goiter (Anxiety, Overall HRQoL). However, significant disease-specific and generic HRQoL deficits persisted on multiple domains across both patient groups. Graves' hyperthyroidism and toxic nodular goiter cause severe disease-specific and generic HRQoL impairments, and HRQoL deficits persist in both patient groups six months after treatment. These data have the potential to improve communication between physicians and patients by offering realistic estimates of expected HRQoL impairments and treatment effects. Future studies should identify risk factors for persistent HRQoL deficits, compare HRQoL effects of the various therapies, and thereby aid in determining the optimal treatment strategies.

Shifty: A Weight-Shifting Dynamic Passive Haptic Proxy to Enhance Object Perception in Virtual Reality.

PubMed

Zenner, Andre; Kruger, Antonio

2017-04-01

We define the concept of Dynamic Passive Haptic Feedback (DPHF) for virtual reality by introducing the weight-shifting physical DPHF proxy object Shifty. This concept combines actuators known from active haptics and physical proxies known from passive haptics to construct proxies that automatically adapt their passive haptic feedback. We describe the concept behind our ungrounded weight-shifting DPHF proxy Shifty and the implementation of our prototype. We then investigate how Shifty can, by automatically changing its internal weight distribution, enhance the user's perception of virtual objects interacted with in two experiments. In a first experiment, we show that Shifty can enhance the perception of virtual objects changing in shape, especially in length and thickness. Here, Shifty was shown to increase the user's fun and perceived realism significantly, compared to an equivalent passive haptic proxy. In a second experiment, Shifty is used to pick up virtual objects of different virtual weights. The results show that Shifty enhances the perception of weight and thus the perceived realism by adapting its kinesthetic feedback to the picked-up virtual object. In the same experiment, we additionally show that specific combinations of haptic, visual and auditory feedback during the pick-up interaction help to compensate for visual-haptic mismatch perceived during the shifting process.

Quality of life in cervical dystonia after treatment with botulinum toxin A: a 24-week prospective study

PubMed Central

Kongsaengdao, Subsai; Maneeton, Benchalak; Maneeton, Narong

2017-01-01

Objective This study aimed to identify possible improvements in disease-specific health-related quality of life (HRQoL) after multiple injections of botulinum toxin A over 24 weeks in Thai cervical dystonia (CD) patients. Materials and methods A 24-week prospective study comparing HRQoL of Thai CD patients before and after multiple injections of botulinum toxin A at 3-month intervals was performed. Disease-specific HRQoL was assessed by using the Cervical Dystonia Impact Profile-58 questionnaire (CDIP-58) and the Craniocervical Dystonia Questionnaire-24 (CDQ-24). General HRQoL was assessed by using the Medical Outcomes’ 36-Item Short Form Health Survey (SF-36) and the EuroQoL 5-dimension questionnaire (EQ-5D). All the assessments were performed before and after the 24-week treatment period. Results A total of 20 CD patients were enrolled in this study from April to December 2011. CDIP-58 and CDQ-24 scores, which assess disease-specific HRQoL, showed a significant improvement after 24 weeks of treatment by botulinum toxin A (P<0.001). However, EQ-5D and SF-36 scores, which assess general HRQoL, showed no significant improvement after the treatment (P>0.05). Conclusion CD patients’ disease-specific HRQoL improved after being treated with multiple botulinum toxin A injections. However, general HRQoL was not improved. PMID:28138245

Quality of life in cervical dystonia after treatment with botulinum toxin A: a 24-week prospective study.

PubMed

Kongsaengdao, Subsai; Maneeton, Benchalak; Maneeton, Narong

2017-01-01

This study aimed to identify possible improvements in disease-specific health-related quality of life (HRQoL) after multiple injections of botulinum toxin A over 24 weeks in Thai cervical dystonia (CD) patients. A 24-week prospective study comparing HRQoL of Thai CD patients before and after multiple injections of botulinum toxin A at 3-month intervals was performed. Disease-specific HRQoL was assessed by using the Cervical Dystonia Impact Profile-58 questionnaire (CDIP-58) and the Craniocervical Dystonia Questionnaire-24 (CDQ-24). General HRQoL was assessed by using the Medical Outcomes' 36-Item Short Form Health Survey (SF-36) and the EuroQoL 5-dimension questionnaire (EQ-5D). All the assessments were performed before and after the 24-week treatment period. A total of 20 CD patients were enrolled in this study from April to December 2011. CDIP-58 and CDQ-24 scores, which assess disease-specific HRQoL, showed a significant improvement after 24 weeks of treatment by botulinum toxin A ( P <0.001). However, EQ-5D and SF-36 scores, which assess general HRQoL, showed no significant improvement after the treatment ( P >0.05). CD patients' disease-specific HRQoL improved after being treated with multiple botulinum toxin A injections. However, general HRQoL was not improved.

Relations of mindfulness facets with psychological symptoms among individuals with a diagnosis of obsessive-compulsive disorder, major depressive disorder, or borderline personality disorder.

PubMed

Didonna, Fabrizio; Rossi, Roberta; Ferrari, Clarissa; Iani, Luca; Pedrini, Laura; Rossi, Nicoletta; Xodo, Erica; Lanfredi, Mariangela

2018-03-25

To explore differences in mindfulness facets among patients with a diagnosis of either obsessive-compulsive disorder (OCD), major depressive disorder (MDD), or borderline personality disorder (BPD), and healthy controls (HC), and their associations with clinical features. One hundred and fifty-three patients and 50 HC underwent a clinical assessment including measures of mindfulness (Five Facets Mindfulness Questionnaire - FFMQ), psychopathological symptoms (Symptom Check List-90-R), dissociation (Dissociative Experience Scale), alexithymia (Alexithymia Scale 20), and depression (Beck Depression Inventory-II). Analysis of variance (ANOVA) and analysis of covariance (ANCOVA) were performed to assess differences in mindfulness scores and their associations with clinical features. The three diagnostic groups scored lower on all mindfulness facets (apart from FFMQobserving) compared to the HC group. OCD group had a significant higher FFMQ total score (FFMQ-TS) and FFMQacting with awareness compared to the BPD group, and scored higher on FFMQdescribing compared to BPD and MDD groups. The scores in non-judging facet were significantly lower in all the three diagnostic groups compared to the HC group. Interestingly, higher FFMQ-TS was inversely related to all psychological measures, regardless of diagnostic group. Deficits in mindfulness skills were present in all diagnostic groups. Furthermore, we found disease-specific relationships between some mindfulness facets and specific psychological variables. Clinical implications are discussed. The study showed deficits in mindfulness scores in all diagnostic groups compared to a healthy control group. Overall, mindfulness construct has a significantly negative association with indexes of global distress, dissociative symptoms, alexithymia, and depression. Mindfulness-based interventions in clinical settings should take into account different patterns of mindfulness skills and their impact on disease-specific maladaptive cognitive strategies or symptomatology. © 2018 The British Psychological Society.

Comparison of the h-Index Scores Among Pathogens Identified as Emerging Hazards in North America.

PubMed

Cox, R; McIntyre, K M; Sanchez, J; Setzkorn, C; Baylis, M; Revie, C W

2016-02-01

Disease surveillance must assess the relative importance of pathogen hazards. Here, we use the Hirsch index (h-index) as a novel method to identify and rank infectious pathogens that are likely to be a hazard to human health in the North American region. This bibliometric index was developed to quantify an individual's scientific research output and was recently used as a proxy measure for pathogen impact. Analysis of more than 3000 infectious organisms indicated that 651 were human pathogen species that had been recorded in the North American region. The h-index of these pathogens ranged from 0 to 584. The h-index of emerging pathogens was greater than non-emerging pathogens as was the h-index of frequently pathogenic pathogens when compared to non-pathogenic pathogens. As expected, the h-index of pathogens varied over time between 1960 and 2011. We discuss how the h-index can contribute to pathogen prioritization and as an indicator of pathogen emergence. © 2014 Blackwell Verlag GmbH.

MAG4 Versus Alternative Techniques for Forecasting Active-Region Flare Productivity

NASA Technical Reports Server (NTRS)

Falconer, David A.; Moore, Ronald L.; Barghouty, Abdulnasser F.; Khazanov, Igor

2014-01-01

MAG4 is a technique of forecasting an active region's rate of production of major flares in the coming few days from a free-magnetic-energy proxy. We present a statistical method of measuring the difference in performance between MAG4 and comparable alternative techniques that forecast an active region's major-flare productivity from alternative observed aspects of the active region. We demonstrate the method by measuring the difference in performance between the "Present MAG4" technique and each of three alternative techniques, called "McIntosh Active-Region Class," "Total Magnetic Flux," and "Next MAG4." We do this by using (1) the MAG4 database of magnetograms and major-flare histories of sunspot active regions, (2) the NOAA table of the major-flare productivity of each of 60 McIntosh active-region classes of sunspot active regions, and (3) five technique-performance metrics (Heidke Skill Score, True Skill Score, Percent Correct, Probability of Detection, and False Alarm Rate) evaluated from 2000 random two-by-two contingency tables obtained from the databases. We find that (1) Present MAG4 far outperforms both McIntosh Active-Region Class and Total Magnetic Flux, (2) Next MAG4 significantly outperforms Present MAG4, (3) the performance of Next MAG4 is insensitive to the forward and backward temporal windows used, in the range of one to a few days, and (4) forecasting from the free-energy proxy in combination with either any broad category of McIntosh active-region classes or any Mount Wilson active-region class gives no significant performance improvement over forecasting from the free-energy proxy alone (Present MAG4).

Preliminary Validation of the PROMIS Parent-Proxy Peer Relationships Measure in Children with Autism Spectrum Disorder: A DBPNet Study.

PubMed

Toomey, Marisa; Schwartz, Justin; Laverdiere, Michele; Tucker, Carole A; Bevans, Katherine; Forrest, Christopher B; Blum, Nathan J

To evaluate the content and construct validity of the existing PROMIS Pediatric Parent-Proxy Peer Relationships Measure in 5- to 12-year-old children with autism spectrum disorder (ASD). Parents of 121 children aged 5 to 12 years who met DSM-IV criteria for ASD completed the Peer Relationships Measure using computerized adaptive testing (CAT). Parents also completed the Social Responsiveness Scale, Second Edition (SRS-2) and a demographic form. Intelligence quotient test results were extracted from clinical or research records. Five parents participated in semi-structured interviews about their child's peer relationships and the item content on the Peer Relationships Measure. The children in the sample were primarily male (87%). The sample was racially and ethnically diverse, and parents were predominantly highly educated. The mean T-score (SD) on the Peer Relationships Measure was 36 (8), with a range from 15 to 62. For 98% of subjects, the CAT required administration of 5 items to reach a standard error of measurement of less than 4 T-score units. The Peer Relationships Measure demonstrated a large correlation with the SRS-2 (r = -0.60, p < .0001). In semi-structured interviews, parents reported that the items on the Peer Relationships Measure were relevant to the peer relationships of their child with ASD, but they reported a few challenges related to variability in their children's peer relationships over time and to somewhat limited knowledge of relationships in school. The PROMIS Pediatric Parent-Proxy Peer Relationships Measure may be an efficient, precise, and valid measure of peer relationships for 5- to 12-year-old children with ASD.

A randomized control intervention trial to improve social skills and quality of life in pediatric brain tumor survivors.

PubMed

Barrera, Maru; Atenafu, Eshetu G; Sung, Lillian; Bartels, Ute; Schulte, Fiona; Chung, Joanna; Cataudella, Danielle; Hancock, Kelly; Janzen, Laura; Saleh, Amani; Strother, Douglas; Downie, Andrea; Zelcer, Shayna; Hukin, Juliette; McConnell, Dina

2018-01-01

To determine if a group social skills intervention program improves social competence and quality of life (QOL) in pediatric brain tumor survivors (PBTS). We conducted a randomized control trial in which PBTS (8-16 years old, off therapy for over 3 months) were allocated to receive social skills training (eg, cooperation, assertion, using social cognitive problem solving strategies, role playing, games, and arts and crafts) in 8 weekly 2-hour sessions, or an attention placebo control (games and arts and crafts only). Outcomes were self-reported, proxy-reported (caregiver), and teacher-reported using the Social Skills Rating System (SSRS), to measure social competence, and the Pediatric Quality of Life (PedsQL4.0, generic) to measure QOL at baseline, after intervention, and at 6 months follow-up. At baseline, SSRS were stratified into low and high scores and included as a covariate in the analysis. Compared to controls (n = 48), PBTS in the intervention group (n = 43) reported significantly better total and empathy SSRS scores, with improvements persisting at follow-up. The PBTS in the intervention group who had low scores at baseline reported the greatest improvements. Proxy and teacher reports showed no intervention effect. Participating in group social skills intervention can improve self-reported social competence that persisted to follow up. The PBTS should be given the opportunity to participate in social skills groups to improve social competence. Copyright © 2017 John Wiley & Sons, Ltd.

Single neuropsychological test scores associated with rate of cognitive decline in early Alzheimer disease.

PubMed

Parikh, Mili; Hynan, Linda S; Weiner, Myron F; Lacritz, Laura; Ringe, Wendy; Cullum, C Munro

2014-01-01

Alzheimer disease (AD) characteristically begins with episodic memory impairment followed by other cognitive deficits; however, the course of illness varies, with substantial differences in the rate of cognitive decline. For research and clinical purposes it would be useful to distinguish between persons who will progress slowly from persons who will progress at an average or faster rate. Our objective was to use neurocognitive performance features and disease-specific and health information to determine a predictive model for the rate of cognitive decline in participants with mild AD. We reviewed the records of a series of 96 consecutive participants with mild AD from 1995 to 2011 who had been administered selected neurocognitive tests and clinical measures. Based on Clinical Dementia Rating (CDR) of functional and cognitive decline over 2 years, participants were classified as Faster (n = 45) or Slower (n = 51) Progressors. Stepwise logistic regression analyses using neurocognitive performance features, disease-specific, health, and demographic variables were performed. Neuropsychological scores that distinguished Faster from Slower Progressors included Trail Making Test - A, Digit Symbol, and California Verbal Learning Test (CVLT) Total Learned and Primacy Recall. No disease-specific, health, or demographic variable predicted rate of progression; however, history of heart disease showed a trend. Among the neuropsychological variables, Trail Making Test - A best distinguished Faster from Slower Progressors, with an overall accuracy of 68%. In an omnibus model including neuropsychological, disease-specific, health, and demographic variables, only Trail Making Test - A distinguished between groups. Several neuropsychological performance features were associated with the rate of cognitive decline in mild AD, with baseline Trail Making Test - A performance best separating those who declined at an average or faster rate from those who showed slower progression.

Munchausen syndrome by adult proxy: a review of the literature.

PubMed

Burton, M Caroline; Warren, Mark B; Lapid, Maria I; Bostwick, J Michael

2015-01-01

Munchausen syndrome by proxy (MSBP), more formally known as factitious disorder imposed on another, is a form of abuse in which a caregiver deliberately produces or feigns illness in a person under his or her care so that the proxy will receive medical care that gratifies the caregiver. Although well documented in the pediatric literature, few cases of MSBP with adult proxies (MSB-AP) have been reported. This study reviews existing literature on MSB-AP to provide a framework for clinicians to recognize this disorder. We searched Ovid MEDLINE, Ovid EMBASE, PubMed, Web of Knowledge, and PsychINFO, supplemented by bibliographic examination. We identified 13 cases of MSB-AP. Perpetrators were caregivers, most (62%) were women, and many worked in healthcare. The age range of the victims was 21 to 82 years. Most were unaware of the abuse, although in 2 cases the victim may have colluded with the perpetrator. Disease fabrication most often resulted from poisoning. MSB-AP should be included in the differential diagnosis of patients presenting with a complex constellation of symptoms without a unifying etiology and an overly involved caregiver with suspected psychological gain. Early identification is necessary so that healthcare providers do not unknowingly perpetuate harm through treatments that satisfy the perpetrator's psychological needs at the proxy's expense. © 2014 Society of Hospital Medicine.

Estimating sales and sales market share from sales rank data for consumer appliances

NASA Astrophysics Data System (ADS)

Touzani, Samir; Van Buskirk, Robert

2016-06-01

Our motivation in this work is to find an adequate probability distribution to fit sales volumes of different appliances. This distribution allows for the translation of sales rank into sales volume. This paper shows that the log-normal distribution and specifically the truncated version are well suited for this purpose. We demonstrate that using sales proxies derived from a calibrated truncated log-normal distribution function can be used to produce realistic estimates of market average product prices, and product attributes. We show that the market averages calculated with the sales proxies derived from the calibrated, truncated log-normal distribution provide better market average estimates than sales proxies estimated with simpler distribution functions.

Administering the Sarcoidosis Health Questionnaire to sarcoidosis patients in Serbia

PubMed Central

Mihailović-Vučinić, Violeta; Gvozdenović, Branislav; Stjepanović, Mihailo; Vuković, Mira; Marković-Denić, Ljiljana; Milovanović, Aleksandar; Videnović-Ivanov, Jelica; Žugić, Vladimir; Škodrić-Trifunović, Vesna; Filipović, Snežana; Omčikus, Maja

2016-01-01

Objective: The aim of this study was to use a Serbian-language version of the disease-specific, self-report Sarcoidosis Health Questionnaire (SHQ), which was designed and originally validated in the United States, to assess health status in sarcoidosis patients in Serbia, as well as validating the instrument for use in the country. Methods: This was a cross-sectional study of 346 patients with biopsy-confirmed sarcoidosis. To evaluate the health status of the patients, we used the SHQ, which was translated into Serbian for the purposes of this study. We compared SHQ scores by patient gender and age, as well as by disease duration and treatment. Lower SHQ scores indicate poorer health status. Results: The SHQ scores demonstrated differences in health status among subgroups of the sarcoidosis patients evaluated. Health status was found to be significantly poorer among female patients and older patients, as well as among those with chronic sarcoidosis or extrapulmonary manifestations of the disease. Monotherapy with methotrexate was found to be associated with better health status than was monotherapy with prednisone or combination therapy with prednisone and methotrexate. Conclusions: The SHQ is a reliable, disease-specific, self-report instrument. Although originally designed for use in the United States, the SHQ could be a useful tool for the assessment of health status in various non-English-speaking populations of sarcoidosis patients. PMID:27167430

Quality and Cultural Sensitivity of Linguistically Appropriate Cardiovascular Disease Information for Chinese Immigrants: A Review of Online Resources From Heart Foundations.

PubMed

Li, Jialin; Lowres, Nicole; Jin, Kai; Zhang, Ling; Neubeck, Lis; Gallagher, Robyn

Chinese immigrants are at an increased risk for cardiovascular diseases (CVDs) compared with Chinese nationals partly because of lifestyle changes and knowledge deficits. Translated patient resources are available on the Internet and are often provided by health professionals; however, the quality and cultural sensitivity of these resources have not been reported. The aim of this study was to assess the availability, quality, and cultural sensitivity of Chinese-language information available from national "Heart Foundations" (cardiac research bodies, nongovernmental organisations) of the 5 most popular destinations of Chinese immigration. This study is a descriptive research in which national "Heart Foundation" websites were systematically searched for Chinese-language CVD patient education resources. Quality (content, identification, structure) was assessed using the Ensuring Quality Information for Patients instrument. Cultural sensitivity was evaluated using the Cultural Sensitivity Assessment Tool. From 107 identified resources, 33 were CVD specific: coronary heart disease (n = 20), arrhythmias (n = 7), and heart failure (n = 6). Quality of resources was adequate (mean Ensuring Quality Information for Patients score, 69%), but scores varied significantly (min, 60%; max, 85%). Although all resources were classified as culturally sensitive (Cultural Sensitivity Assessment Tool score ≥ 2.5), 2 resources scored low (≤2.5) for visual impact, and across all resources, written and visual domains were assessed as least culturally sensitive. Most resources lacked culturally specific references. Chinese-language CVD resources were inconsistent in the supply of key information. Quality and level of cultural sensitivity were adequate, but most resources lacked culturally specific references. Comprehensive, high-quality CVD resources powered by Editorial Manager and ProduXion Manager from Aries Systems Corporation tailored for Chinese immigrants are urgently needed for healthcare providers to support CVD education and care of patients belonging to this population.

The meaning of (quality of) life in patients with eating disorders: a comparison of generic and disease-specific measures across diagnosis and outcome.

PubMed

Ackard, Diann M; Richter, Sara; Egan, Amber; Engel, Scott; Cronemeyer, Catherine L

2014-04-01

Compare general and disease-specific health-related quality of life (HRQoL) among female patients with an eating disorder (ED). Female patients (n = 221; 95.3% Caucasian; 94.0% never married) completed the Medical Outcome Short Form Health Survey (SF-36) and Eating Disorders Quality of Life (EDQoL) as part of a study of treatment outcomes. Multivariate regression models were used to compare HRQoL differences across initial ED diagnosis (85 AN-R, 19 AN-B/P, 27 BN, 90 EDNOS) and ED diagnostic classification at time of outcome assessment (140 no ED, 38 subthreshold ED, 43 full threshold ED). There were no significant differences across ED diagnosis at initial assessment on either of the SF-36 Component Summary scores. However, patients with AN-B/P scored poorer on the work/school EDQoL subscales than other ED diagnoses, and on the psychological EDQoL subscale compared to AN-R and EDNOS. At outcome assessment, comparisons across full threshold, subthreshold and no ED classification indicated that those with no ED reported better HRQoL than those with full threshold ED on the SF-36 Mental Components Summary and three of four EDQoL subscales. Furthermore, those with no ED reported better psychological HRQoL than those with subthreshold ED. Disease-specific HRQOL measures are important to use when comparing HRQoL in ED patients across treatment and outcome, and may have the sensitivity to detect meaningful differences by diagnosis more so than generic instruments. EDQoL scores from patients remitted from symptoms approach but do not reach scores for unaffected college females; thus, treatment should continue until quality of life is restored. Copyright © 2013 Wiley Periodicals, Inc.

Opportunities and challenges for the use of molecular proxies in environmental reconstructions

NASA Astrophysics Data System (ADS)

Jansen, Boris

2017-04-01

The last decades have seen a dramatic increase in the use of organic matter from soils and sediments as molecular proxy for reconstructing past dynamics of vegetation and climate. Applications range from the use of changes in preserved leaf wax lipid patterns or d13C signatures of organic matter to reconstruct shifts in vegetation composition, to the use of changes in d2H patterns as a past humidity / precipitation proxy. Particularly exciting in this respect are recent developments with respect to combining various molecular proxies. For instance by compound specific d13C and d2H analysis of selected lipids that themselves are used as vegetation proxy. However, as with all scientific development, all that glitters is not gold. Together with great promise, successful application of molecular proxies to reconstruct past environmental change also comes with several important challenges. For instance, to what extent are plant lipid patterns used for vegetation reconstruction affected by genotypic plasticity of the producing plant species? How might the heterogeneity of environmental and biochemical processes on/in different plant species interfere with the successful use of d2H and d13C patterns? What is the influence of differences in input routes into a soil or sedimentary archive, e.g. aboveground vs. belowground, on the desired reconstruction? In this presentation I will discuss both the opportunities and the challenges of the use of organic matter as molecular proxy in environmental reconstructions, using several recent examples of research from our group.

The Last Millennium Reanalysis: Improvements to proxies and proxy modeling

NASA Astrophysics Data System (ADS)

Tardif, R.; Hakim, G. J.; Emile-Geay, J.; Noone, D.; Anderson, D. M.

2017-12-01

The Last Millennium Reanalysis (LMR) employs a paleoclimate data assimilation (PDA) approach to produce climate field reconstructions (CFRs). Here, we focus on two key factors in PDA generated CFRs: the set of assimilated proxy records and forward models (FMs) used to estimate proxies from climate model output. In the initial configuration of the LMR [Hakim et al., 2016], the proxy dataset of [PAGES2k Consortium, 2013] was used, along with univariate linear FMs calibrated against annually-averaged 20th century temperature datasets. In an updated configuration, proxy records from the recent dataset [PAGES2k Consortium, 2017] are used, while a hierarchy of statistical FMs are tested: (1) univariate calibrated on annual temperature as in the initial configuration, (2) univariate against temperature as in (1) but calibration performed using expert-derived seasonality for individual proxy records, (3) as in (2) but expert proxy seasonality replaced by seasonal averaging determined objectively as part of the calibration process, (4) linear objective seasonal FMs as in (3) but objectively selecting relationships calibrated either on temperature or precipitation, and (5) bivariate linear models calibrated on temperature and precipitation with objectively-derived seasonality. (4) and (5) specifically aim at better representing the physical drivers of tree ring width proxies. Reconstructions generated using the CCSM4 Last Millennium simulation as an uninformed prior are evaluated against various 20th century data products. Results show the benefits of using the new proxy collection, particularly on the detrended global mean temperature and spatial patterns. The positive impact of using proper seasonality and temperature/moisture sensitivities for tree ring width records is also notable. This updated configuration will be used for the first generation of LMR-generated CFRs to be publicly released. These also provide a benchmark for future efforts aimed at evaluating the impact of additional proxy records and/or more sophisticated physically-based forward models. References: Hakim, G. J., and co-authors (2016), J. Geophys. Res. Atmos., doi:10.1002/2016JD024751 PAGES2K Consortium (2013), Nat. Geosci., doi:10.1038/ngeo1797 PAGES2k Consortium (2017), Sci. Data. doi:10.1038/sdata.2017.88

A comprehensive questionnaire for the assessment of health-related quality of life in coeliac disease (CDQL).

PubMed

Skjerning, Halfdan; Hourihane, Jonathan; Husby, Steffen; DunnGalvin, Audrey

2017-10-01

Coeliac disease (CD) is a chronic immune-mediated disease in genetically susceptible individuals, induced by ingested gluten. The treatment for CD is a lifelong gluten-free diet (GFD). The GFD involves restrictions in diet that may impact on a person's Health-Related Quality of Life (HRQoL). The aim of the present study was to develop the Coeliac Disease Quality of Life questionnaire (CDQL): a comprehensive CD-specific HRQoL measure that can be completed by children, adolescents, and adults or by proxy. The questionnaire was developed in three phases. In phase 1, focus group methods and qualitative analysis of verbatim transcripts generated CD-specific items for a prototype instrument to sensitively captured patient concerns. In phase 2, CD patients completed the prototype CDQL. The questionnaire was refined through analysis of data and cognitive interviewing. In phase 3, the final version of the CDQL was answered by Danish respondents. The psychometric properties of the CDQL were assessed, and the HRQoL data were analyzed. The CDQL was completed by 422 respondents. The CDQL has 12 patient background items, 2 generic HRQoL items, and 30 CD-specific HRQoL item. The CD-specific HRQoL items were distributed on eight scales with acceptable to excellent reliability. Comprehensiveness and understandability was shown by feedback from cognitive interviewing from children, adolescents, and adults. Content validity was ensured by involving patients and clinicians in the development of the questionnaire. Sensitivity of the questionnaire was demonstrated in differences found between children, adolescents, and adult's perception of their HRQoL in relation to having CD. The CDQL comprehensively measures HRQoL in CD, and is psychometrically robust. The questionnaire may prove useful in tracking HRQoL in CD across age groups.

Stratifying the risks of oral anticoagulation in patients with liver disease.

PubMed

Efird, Lydia M; Mishkin, Daniel S; Berlowitz, Dan R; Ash, Arlene S; Hylek, Elaine M; Ozonoff, Al; Reisman, Joel I; Zhao, Shibei; Jasuja, Guneet K; Rose, Adam J

2014-05-01

Chronic liver disease presents a relative contraindication to warfarin therapy, but some patients with liver disease nevertheless require long-term anticoagulation. The goal is to identify which patients with liver disease might safely receive warfarin. Among 102 134 patients who received warfarin from the Veterans Affairs from 2007 to 2008, International Classification of Diseases-Ninth Revision codes identified 1763 patients with chronic liver disease. Specific diagnoses and laboratory values (albumin, aspartate aminotransferase, alanine aminotransferase, creatinine, and cholesterol) were examined to identify risk of adverse outcomes, while controlling for available bleeding risk factors. Outcomes included percent time in therapeutic range, a measure of anticoagulation control, and major hemorrhagic events, by International Classification of Diseases-Ninth Revision codes. Patients with liver disease had lower mean time in therapeutic range (53.5%) when compared with patients without (61.7%; P<0.001) and more hemorrhages (hazard ratio, 2.02; P<0.001). Among patients with liver disease, serum albumin and creatinine levels were the strongest predictors of both outcomes. We created a 4-point score system: patients received 1 point each for albumin (2.5-3.49 g/dL) or creatinine (1.01-1.99 mg/dL), and 2 points each for albumin (<2.5 g/dL) or creatinine (≥2 mg/dL). This score predicted both anticoagulation control and hemorrhage. When compared with patients without liver disease, those with a score of zero had modestly lower time in therapeutic range (56.7%) and no increase in hemorrhages (hazard ratio, 1.16; P=0.59), whereas those with the worst score (4) had poor control (29.4%) and high hazard of hemorrhage (hazard ratio, 8.53; P<0.001). Patients with liver disease receiving warfarin have poorer anticoagulation control and more hemorrhages. A simple 4-point scoring system using albumin and creatinine identifies those at risk for poor outcomes. © 2014 American Heart Association, Inc.

Evaluation of wavelet spectral features in pathological detection and discrimination of yellow rust and powdery mildew in winter wheat with hyperspectral reflectance data

NASA Astrophysics Data System (ADS)

Shi, Yue; Huang, Wenjiang; Zhou, Xianfeng

2017-04-01

Hyperspectral absorption features are important indicators of characterizing plant biophysical variables for the automatic diagnosis of crop diseases. Continuous wavelet analysis has proven to be an advanced hyperspectral analysis technique for extracting absorption features; however, specific wavelet features (WFs) and their relationship with pathological characteristics induced by different infestations have rarely been summarized. The aim of this research is to determine the most sensitive WFs for identifying specific pathological lesions from yellow rust and powdery mildew in winter wheat, based on 314 hyperspectral samples measured in field experiments in China in 2002, 2003, 2005, and 2012. The resultant WFs could be used as proxies to capture the major spectral absorption features caused by infestation of yellow rust or powdery mildew. Multivariate regression analysis based on these WFs outperformed conventional spectral features in disease detection; meanwhile, a Fisher discrimination model exhibited considerable potential for generating separable clusters for each infestation. Optimal classification returned an overall accuracy of 91.9% with a Kappa of 0.89. This paper also emphasizes the WFs and their relationship with pathological characteristics in order to provide a foundation for the further application of this approach in monitoring winter wheat diseases at the regional scale.

Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors

PubMed Central

Switzer, Galen E.; Bruce, Jessica; Kiefer, Deidre M.; Kobusingye, Hati; Drexler, Rebecca; Besser, RaeAnne M.; Confer, Dennis L.; Horowitz, Mary M.; King, Roberta J.; Shaw, Bronwen E.; van Walraven, Suzanna M.; Wiener, Lori; Packman, Wendy; Varni, James W.; Pulsipher, Michael A.

2016-01-01

Objectives To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. Study design A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemo-graphic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. Results Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. Conclusions Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors. PMID:27522440

Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors.

PubMed

Switzer, Galen E; Bruce, Jessica; Kiefer, Deidre M; Kobusingye, Hati; Drexler, Rebecca; Besser, RaeAnne M; Confer, Dennis L; Horowitz, Mary M; King, Roberta J; Shaw, Bronwen E; van Walraven, Suzanna M; Wiener, Lori; Packman, Wendy; Varni, James W; Pulsipher, Michael A

2016-11-01

To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemographic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors. Published by Elsevier Inc.

Higher Mortality in registrants with sudden model for end-stage liver disease increase: Disadvantaged by the current allocation policy.

PubMed

Massie, Allan B; Luo, Xun; Alejo, Jennifer L; Poon, Anna K; Cameron, Andrew M; Segev, Dorry L

2015-05-01

Liver allocation is based on current Model for End-Stage Liver Disease (MELD) scores, with priority in the case of a tie being given to those waiting the longest with a given MELD score. We hypothesized that this priority might not reflect risk: registrants whose MELD score has recently increased receive lower priority but might have higher wait-list mortality. We studied wait-list and posttransplant mortality in 69,643 adult registrants from 2002 to 2013. By likelihood maximization, we empirically defined a MELD spike as a MELD increase ≥ 30% over the previous 7 days. At any given time, only 0.6% of wait-list patients experienced a spike; however, these patients accounted for 25% of all wait-list deaths. Registrants who reached a given MELD score after a spike had higher wait-list mortality in the ensuing 7 days than those with the same resulting MELD score who did not spike, but they had no difference in posttransplant mortality. The spike-associated wait-list mortality increase was highest for registrants with medium MELD scores: specifically, 2.3-fold higher (spike versus no spike) for a MELD score of 10, 4.0-fold higher for a MELD score of 20, and 2.5-fold higher for a MELD score of 30. A model incorporating the MELD score and spikes predicted wait-list mortality risk much better than a model incorporating only the MELD score. Registrants with a sudden MELD increase have a higher risk of short-term wait-list mortality than is indicated by their current MELD score but have no increased risk of posttransplant mortality; allocation policy should be adjusted accordingly. © 2015 American Association for the Study of Liver Diseases.

Common Clinical Practice versus new PRIM Score in Predicting Coronary Heart Disease Risk

PubMed Central

Frikke-Schmidt, Ruth; Tybjærg-Hansen, Anne; Schnohr, Peter; Jensen, Gorm B.; Nordestgaard, Børge G.

2011-01-01

Objectives To compare the new Patient Rule Induction Method(PRIM) Score and common clinical practice with the Framingham Point Score for classification of individuals with respect to coronary heart disease(CHD) risk. Methods and Results PRIM Score and the Framingham Point Score were estimated for 11,444 participants from the Copenhagen City Heart Study. Gender specific cumulative incidences and 10 year absolute CHD risks were estimated for subsets defined by age, total cholesterol, high-density lipoprotein(HDL) cholesterol, blood pressure, diabetes and smoking categories. PRIM defined seven mutually exclusive subsets in women and men, with cumulative incidences of CHD from 0.01 to 0.22 in women, and from 0.03 to 0.26 in men. PRIM versus Framingham Point Score found 11% versus 4% of all women, and 31% versus 35% of all men to have 10 year CHD risks >20%. Among women ≥65 years with hypertension and/or with diabetes, 10 year CHD risk >20% was found for 100% with PRIM scoring but for only 18% with the Framingham Point Score. Conclusion Compared to the PRIM Score, common clinical practice with the Framingham Point Score underestimates CHD risk in women, especially in women ≥65 years with hypertension and/or with diabetes. PMID:20728887

Visual versus semi-quantitative analysis of 18F-FDG-PET in amnestic MCI: an European Alzheimer's Disease Consortium (EADC) project.

PubMed

Morbelli, Silvia; Brugnolo, Andrea; Bossert, Irene; Buschiazzo, Ambra; Frisoni, Giovanni B; Galluzzi, Samantha; van Berckel, Bart N M; Ossenkoppele, Rik; Perneczky, Robert; Drzezga, Alexander; Didic, Mira; Guedj, Eric; Sambuceti, Gianmario; Bottoni, Gianluca; Arnaldi, Dario; Picco, Agnese; De Carli, Fabrizio; Pagani, Marco; Nobili, Flavio

2015-01-01

We aimed to investigate the accuracy of FDG-PET to detect the Alzheimer's disease (AD) brain glucose hypometabolic pattern in 142 patients with amnestic mild cognitive impairment (aMCI) and 109 healthy controls. aMCI patients were followed for at least two years or until conversion to dementia. Images were evaluated by means of visual read by either moderately-skilled or expert readers, and by means of a summary metric of AD-like hypometabolism (PALZ score). Seventy-seven patients converted to AD-dementia after 28.6 ± 19.3 months of follow-up. Expert reading was the most accurate tool to detect these MCI converters from healthy controls (sensitivity 89.6%, specificity 89.0%, accuracy 89.2%) while two moderately-skilled readers were less (p < 0.05) specific (sensitivity 85.7%, specificity 79.8%, accuracy 82.3%) and PALZ score was less (p < 0.001) sensitive (sensitivity 62.3%, specificity 91.7%, accuracy 79.6%). Among the remaining 67 aMCI patients, 50 were confirmed as aMCI after an average of 42.3 months, 12 developed other dementia, and 3 reverted to normalcy. In 30/50 persistent MCI patients, the expert recognized the AD hypometabolic pattern. In 13/50 aMCI, both the expert and PALZ score were negative while in 7/50, only the PALZ score was positive due to sparse hypometabolic clusters mainly in frontal lobes. Visual FDG-PET reads by an expert is the most accurate method but an automated, validated system may be particularly helpful to moderately-skilled readers because of high specificity, and should be mandatory when even a moderately-skilled reader is unavailable.

Longer-Term Investigation of the Value of 18F-FDG-PET and Magnetic Resonance Imaging for Predicting the Conversion of Mild Cognitive Impairment to Alzheimer's Disease: A Multicenter Study.

PubMed

Inui, Yoshitaka; Ito, Kengo; Kato, Takashi

2017-01-01

The value of fluorine-18-fluorodeoxyglucose positron emission tomography (18F-FDG-PET) and magnetic resonance imaging (MRI) for predicting conversion of mild cognitive impairment (MCI) to Alzheimer's disease (AD) in longer-term is unclear. To evaluate longer-term prediction of MCI to AD conversion using 18F-FDG-PET and MRI in a multicenter study. One-hundred and fourteen patients with MCI were followed for 5 years. They underwent clinical and neuropsychological examinations, 18F-FDG-PET, and MRI at baseline. PET images were visually classified into predefined dementia patterns. PET scores were calculated as a semi quantitative index. For structural MRI, z-scores in medial temporal area were calculated by automated volume-based morphometry (VBM). Overall, 72% patients with amnestic MCI progressed to AD during the 5-year follow-up. The diagnostic accuracy of PET scores over 5 years was 60% with 53% sensitivity and 84% specificity. Visual interpretation of PET images predicted conversion to AD with an overall 82% diagnostic accuracy, 94% sensitivity, and 53% specificity. The accuracy of VBM analysis presented little fluctuation through 5 years and it was highest (73%) at the 5-year follow-up, with 79% sensitivity and 63% specificity. The best performance (87.9% diagnostic accuracy, 89.8% sensitivity, and 82.4% specificity) was with a combination identified using multivariate logistic regression analysis that included PET visual interpretation, educational level, and neuropsychological tests as predictors. 18F-FDG-PET visual assessment showed high performance for predicting conversion to AD from MCI, particularly in combination with neuropsychological tests. PET scores showed high diagnostic specificity. Structural MRI focused on the medial temporal area showed stable predictive value throughout the 5-year course.

Time to foster a rational approach to preventing cardiovascular morbid events.

PubMed

Cohn, Jay N; Duprez, Daniel A

2008-07-29

Efforts to prevent atherosclerotic morbid events have focused primarily on risk factor prevention and intervention. These approaches, based on the statistical association of risk factors with events, have dominated clinical practice in the last generation. Because the cardiovascular abnormalities eventuating in morbid events are detectable in the arteries and heart before the development of symptomatic disease, recent efforts have focused on identifying the presence of these abnormalities as a more sensitive and specific guide to the need for therapy. Advances in noninvasive techniques for studying the vasculature and the left ventricle now provide the opportunity to use early disease rather than risk factors as the tool for clinical decision making. A disease scoring system has been developed using 10 tests of vascular and cardiac function and structure. More extensive data to confirm the sensitivity and specificity of this scoring system and to demonstrate its utility in tracking the response to therapy are needed to justify widespread application in clinical practice.

Ability of King's College Criteria and Model for End-Stage Liver Disease Scores to Predict Mortality of Patients With Acute Liver Failure: A Meta-analysis.

PubMed

McPhail, Mark J W; Farne, Hugo; Senvar, Naz; Wendon, Julia A; Bernal, William

2016-04-01

Several prognostic factors are used to identify patients with acute liver failure (ALF) who require emergency liver transplantation. We performed a meta-analysis to determine the accuracy of King's College criteria (KCC) versus the model for end-stage liver disease (MELD) scores in predicting hospital mortality among patients with ALF. We performed a systematic search of the literature for articles published from 2001 through 2015 that compared the accuracy of the KCC with MELD scores in predicting hospital mortality in patients with ALF. We identified 23 studies (comprising 2153 patients) and assessed the quality of data, and then performed a meta-analysis of pooled sensitivity and specificity values, diagnostic odds ratios (DORs), and summary receiver operating characteristic curves. Subgroups analyzed included study quality, era, location (Europe vs non-Europe), and size; ALF etiology (acetaminophen-associated ALF [AALF] vs nonassociated [NAALF]); and whether or not the study included patients who underwent liver transplantation and if the study center was also a transplant center. The DOR for the KCC was 5.3 (95% confidence interval [CI], 3.7-7.6; 57% heterogeneity) and the DOR for MELD score was 7.0 (95% CI, 5.1-9.7; 48% heterogeneity), so the MELD score and KCC are comparable in overall accuracy. The summary area under the receiver operating characteristic curve values was 0.76 for the KCC and 0.78 for MELD scores. The KCC identified patients with AALF who died with 58% sensitivity (95% CI, 51%-65%) and 89% specificity (95% CI, 85%-93%), whereas MELD scores identified patients with AALF who died with 80% sensitivity (95% CI, 74%-86%) and 53% specificity (95% CI, 47%-59%). The KCC predicted hospital mortality in patients with NAALF with 58% sensitivity (95% CI, 54%-63%) and 74% specificity (95% CI, 69%-78%), whereas MELD scores predicted hospital mortality in patients with NAALF with 76% sensitivity (95% CI, 72%-80%) and 73% specificity (95% CI, 69%-78%). In patients with AALF, the KCC's DOR was 10.4 (95% CI, 4.9-22.1) and the MELD score's DOR was 6.6 (95% CI, 2.1-20.2). In patients with NAALF, the KCC's DOR was 4.16 (95% CI, 2.34-7.40) and the MELD score's DOR was 8.42 (95% CI, 5.98-11.88). Based on a meta-analysis of studies, the KCC more accurately predicts hospital mortality among patients with AALF, whereas MELD scores more accurately predict mortality among patients with NAALF. However, there is significant heterogeneity among studies and neither system is optimal for all patients. Given the importance of specificity in decision making for listing for emergency liver transplantation, MELD scores should not replace the KCC in predicting hospital mortality of patients with AALF, but could have a role for NAALF. Copyright © 2016 AGA Institute. Published by Elsevier Inc. All rights reserved.

Associations between subjective happiness and dry eye disease: a new perspective from the Osaka study.

PubMed

Kawashima, Motoko; Uchino, Miki; Yokoi, Norihiko; Uchino, Yuichi; Dogru, Murat; Komuro, Aoi; Sonomura, Yukiko; Kato, Hiroaki; Kinoshita, Shigeru; Mimura, Masaru; Tsubota, Kazuo

2015-01-01

Dry eye disease has become an important health problem. A lack of concordance between self-reported symptoms and the outcome of dry eye examinations has raised questions about dry eye disease. To explore the association between subjective happiness and objective and subjective symptoms of dry eye disease. The study adopted a cross-sectional design. All the employees of a company in Osaka, Japan. 672 Japanese office workers using Visual Display Terminals (age range: 26-64 years). The dry eye measurement tools included the Schirmer test, conjunctivocorneal staining, the tear film break-up time, as well as the administration of a dry eye symptoms questionnaire. Happiness was measured by the Subjective Happiness Scale. Dry eye examination parameters, dry eye symptoms questionnaires, and the Subjective Happiness Scale score. Of the 672 workers, 561 (83.5%) completed the questionnaires and examinations. The mean Subjective Happiness Scale score was 4.91 (SD = 1.01). This score was inversely correlated with the dry eye symptom score (r = -0.188, p < 0.001), but was not associated with objective findings which include conjunctivocorneal staining, low Schirmer test score, or low tear film break-up time. The level of subjective happiness was the lowest in the group without objective results, but reported subjective symptoms of dry eyes (p < 0.05). There is evidence of the relationship between subjective happiness and self-reported symptoms of dry eyes. Findings of this study revealed a new perspective on dry eye disease, including the potential for innovative treatments of a specific population with dry eye disease.

Likelihood of Condom Use When Sexually Transmitted Diseases Are Suspected: Results from a Clinic Sample

ERIC Educational Resources Information Center

Crosby, Richard A.; Milhausen, Robin R.; Graham, Cynthia A.; Yarber, William L.; Sanders, Stephanie A.; Charnigo, Richard; Shrier, Lydia A.

2014-01-01

Objective: To determine the event-level associations between perceived risk of sexually transmitted disease (STD) acquisition/transmission and condom use during penile-vaginal intercourse (PVI) among STD clinic attendees. Method: A convenience sample (N = 622) completed daily electronic assessments. Two questions were proxies of perceived risk:…

The New DSM-5 Impairment Criterion: A Challenge to Early Autism Spectrum Disorder Diagnosis?

ERIC Educational Resources Information Center

Zander, Eric; Bölte, Sven

2015-01-01

The possible effect of the DSM-5 impairment criterion on diagnosing autism spectrum disorder (ASD) in young children was examined in 127 children aged 20-47 months with a DSM-IV-TR clinical consensus diagnosis of ASD. The composite score of the Vineland Adaptive Behavior Scales (VABS) served as a proxy for the DSM-5 impairment criterion. When…

Quality of Life of High-Functioning Children and Youth with Autism Spectrum Disorder and Typically Developing Peers: Self- and Proxy-Reports

ERIC Educational Resources Information Center

Egilson, Snaefrídur T.; Ólafsdóttir, Linda B.; Leósdóttir, Thóra; Saemundsen, Evald

2017-01-01

Studies have shown parents to report lower quality of life for their children with autism spectrum disorder than children's self-report scores and the same applies for data on typically developing children. Our objectives were to: (1) explore how high-functioning children with autism spectrum disorder rate their quality of life compared with…

Oncological Outcomes After Radical Prostatectomy for High-Risk Prostate Cancer Based on New Gleason Grouping System: A Validation Study From University of Southern California With 3,755 Cases.

PubMed

Djaladat, Hooman; Amini, Erfan; Xu, Weichen; Cai, Jie; Daneshmand, Siamak; Lieskovsky, Gary

2017-05-01

To assess the prognostic value of new Gleason grade grouping system in high-risk prostate cancer patients, we compared oncological outcomes after radical prostatectomy for patients with Gleason score 8 versus 9-10. Between 1987 and 2008, 3,755 men underwent radical prostatectomy with curative intent at University of Southern California. Patients who had Gleason score 8-10 at final histopathological evaluation (pT2-4N0) were included in this study. Eligible patients were divided into two groups; 226 with Gleason score 8 and 132 with Gleason score 9-10. Various patient and disease characteristics as well as oncological outcomes (biochemical recurrence, clinical recurrence, and overall survival) were compared between the groups. Impact of Gleason score on outcomes was controlled for preoperative prostate specific antigen, pathological stage, use of adjuvant radiotherapy, and neoadjuvant/adjuvant hormone therapy in multivariable analyses. A total of 358 patients (mean age: 65 years) were included in the analysis. Mean age and median duration of follow-up (9.6 years) were comparable between the study groups. Gleason 9-10 prostate cancer was associated with worse biochemical (HR 1.6; 95%CI [1.1-2.3]) and clinical recurrence free survival (HR = 1.9; 95%CI [1.1-3.3]); however, overall survival did not differ significantly between the groups. In addition, more patients with Gleason score 9-10 received adjuvant hormone therapy in the course of disease. Long-term follow-up after radical prostatectomy revealed significant differences in disease-specific outcomes between patients with Gleason score 8 versus 9-10. This sub-classification of high-risk patients might be helpful for patient counseling and determining therapeutic strategies. Prostate 77:743-748, 2017. © 2017 Wiley Periodicals, Inc. © 2017 Wiley Periodicals, Inc.

SNPranker 2.0: a gene-centric data mining tool for diseases associated SNP prioritization in GWAS.

PubMed

Merelli, Ivan; Calabria, Andrea; Cozzi, Paolo; Viti, Federica; Mosca, Ettore; Milanesi, Luciano

2013-01-01

The capability of correlating specific genotypes with human diseases is a complex issue in spite of all advantages arisen from high-throughput technologies, such as Genome Wide Association Studies (GWAS). New tools for genetic variants interpretation and for Single Nucleotide Polymorphisms (SNPs) prioritization are actually needed. Given a list of the most relevant SNPs statistically associated to a specific pathology as result of a genotype study, a critical issue is the identification of genes that are effectively related to the disease by re-scoring the importance of the identified genetic variations. Vice versa, given a list of genes, it can be of great importance to predict which SNPs can be involved in the onset of a particular disease, in order to focus the research on their effects. We propose a new bioinformatics approach to support biological data mining in the analysis and interpretation of SNPs associated to pathologies. This system can be employed to design custom genotyping chips for disease-oriented studies and to re-score GWAS results. The proposed method relies (1) on the data integration of public resources using a gene-centric database design, (2) on the evaluation of a set of static biomolecular annotations, defined as features, and (3) on the SNP scoring function, which computes SNP scores using parameters and weights set by users. We employed a machine learning classifier to set default feature weights and an ontological annotation layer to enable the enrichment of the input gene set. We implemented our method as a web tool called SNPranker 2.0 (http://www.itb.cnr.it/snpranker), improving our first published release of this system. A user-friendly interface allows the input of a list of genes, SNPs or a biological process, and to customize the features set with relative weights. As result, SNPranker 2.0 returns a list of SNPs, localized within input and ontologically enriched genes, combined with their prioritization scores. Different databases and resources are already available for SNPs annotation, but they do not prioritize or re-score SNPs relying on a-priori biomolecular knowledge. SNPranker 2.0 attempts to fill this gap through a user-friendly integrated web resource. End users, such as researchers in medical genetics and epidemiology, may find in SNPranker 2.0 a new tool for data mining and interpretation able to support SNPs analysis. Possible scenarios are GWAS data re-scoring, SNPs selection for custom genotyping arrays and SNPs/diseases association studies.

Modifications of the National Early Warning Score for patients with chronic respiratory disease.

PubMed

Pedersen, N E; Rasmussen, L S; Petersen, J A; Gerds, T A; Østergaard, D; Lippert, A

2018-02-01

The National Early Warning Score (NEWS) uses physiological variables to detect deterioration in hospitalized patients. However, patients with chronic respiratory disease may have abnormal variables not requiring interventions. We studied how the Capital Region of Denmark NEWS Override System (CROS), the Chronic Respiratory Early Warning Score (CREWS) and the Salford NEWS (S-NEWS) affected NEWS total scores and NEWS performance. In an observational study, we included patients with chronic respiratory disease. The frequency of use of CROS and the NEWS total score changes caused by CROS, CREWS and S-NEWS were described. NEWS, CROS, CREWS and S-NEWS were compared using 48-h mortality and intensive care unit (ICU) admission within 48 h as outcomes. We studied 11,266 patients during 25,978 admissions; the use of CROS lowered NEWS total scores in 40% of included patients. CROS, CREWS and S-NEWS had lower sensitivities than NEWS for 48-h mortality and ICU admission. Specificities and PPV were higher. CROS, CREWS and S-NEWS downgraded, respectively, 51.5%, 44.9% and 32.8% of the NEWS total scores from the 'mandatory doctor presence' and 'immediate doctor presence and specialist consultation' total score intervals to lower intervals. Capital Region of Denmark NEWS Override System was frequently used in patients with chronic respiratory disease. CROS, CREWS and S-NEWS reduced sensitivity for 48-h mortality and ICU admission. Using the methodology prevalent in the NEWS literature, we cannot conclude on the safety of these systems. Future prospective studies should investigate the balance between detection rate and alarm fatigue of different systems, or use controlled designs and patient-centred outcomes. © 2017 The Acta Anaesthesiologica Scandinavica Foundation. Published by John Wiley & Sons Ltd.

Impairments in Component Processes of Executive Function and Episodic Memory in Alcoholism, HIV Infection, and HIV Infection with Alcoholism Comorbidity.

PubMed

Fama, Rosemary; Sullivan, Edith V; Sassoon, Stephanie A; Pfefferbaum, Adolf; Zahr, Natalie M

2016-12-01

Executive functioning and episodic memory impairment occur in HIV infection (HIV) and chronic alcoholism (ALC). Comorbidity of these conditions (HIV + ALC) is prevalent and heightens risk of vulnerability to separate and compounded deficits. Age and disease-related variables can also serve as mediators of cognitive impairment and should be considered, given the extended longevity of HIV-infected individuals in this era of improved pharmacological therapy. HIV, ALC, HIV + ALC, and normal controls (NC) were administered traditional and computerized tests of executive function and episodic memory. Test scores were expressed as age- and education-corrected Z-scores; selective tests were averaged to compute Executive Function and Episodic Memory Composite scores. Efficiency scores were calculated for tests with accuracy and response times. HIV, ALC, and HIV + ALC had lower scores than NC on Executive Function and Episodic Memory Composites, with HIV + ALC even lower than ALC and HIV on the Episodic Memory Composite. Impairments in planning and free recall of visuospatial material were observed in ALC, whereas impairments in psychomotor speed, sequencing, narrative free recall, and pattern recognition were observed in HIV. Lower decision-making efficiency scores than NC occurred in all 3 clinical groups. In ALC, age and lifetime alcohol consumption were each unique predictors of Executive Function and Episodic Memory Composite scores. In HIV + ALC, age was a unique predictor of Episodic Memory Composite score. Disease-specific and disease-overlapping patterns of impairment in HIV, ALC, and HIV + ALC have implications regarding brain systems disrupted by each disease and clinical ramifications regarding the complexities and compounded damping of cognitive functioning associated with dual diagnosis that may be exacerbated with aging. Copyright © 2016 by the Research Society on Alcoholism.

Performance of IUCN proxies for generation length.

PubMed

Fung, Han Chi; Waples, Robin S

2017-08-01

One of the criteria used by the International Union for Conservation of Nature (IUCN) to assess threat status is the rate of decline in abundance over 3 generations or 10 years, whichever is longer. The traditional method for calculating generation length (T) uses age-specific survival and fecundity, but these data are rarely available. Consequently, proxies that require less information are often used, which introduces potential biases. The IUCN recommends 2 proxies based on adult mortality rate, T̂d = α + 1/d, and reproductive life span, T̂z = α + z * RL, where α is age at first reproduction, d is adult mortality rate, RL is reproductive life span, and z is a coefficient derived from data for comparable species. We used published life tables for 78 animal and plant populations to evaluate precision and bias of these proxies by comparing T̂d and T̂z with true generation length. Mean error rates in estimating T were 31% for T̂d and 20% for T̂z, but error rates for T̂d were 16% when we subtracted 1 year ( T̂d( adj )=T̂d-1 ), as suggested by theory; T̂d( adj ) also provided largely unbiased estimates regardless of the true generation length. Performance of T̂z depends on compilation of detailed data for comparable species, but our results suggest taxonomy is not a reliable indicator of comparability. All 3 proxies depend heavily on a reliable estimate of age at first reproduction, as we illustrated with 2 test species. The relatively large mean errors for all proxies emphasized the importance of collecting the detailed life-history information necessary to calculate true generation length. Unfortunately, publication of such data is less common than it was decades ago. We identified generic patterns of age-specific change in vital rates that can be used to predict expected patterns of bias from applying T̂d( adj ). Published 2017. This article is a U.S. Government work and is in the public domain in the USA.

D2R2: an evidence-based decision support tool to aid prioritisation of animal health issues for government funding.

PubMed

Gibbens, J C; Frost, A J; Houston, C W; Lester, H; Gauntlett, F A

2016-11-26

An evidence-based decision support tool, 'D2R2', has been developed by Defra. It contains a wide range of standardised information about exotic and endemic diseases held in 'disease profiles'. Each profile includes 40 criteria used for scoring, enabling D2R2 to provide relative priority rankings for every disease profiled. D2R2 also provides a range of reports for each disease and the functionality to explore the impact of changes in any criterion or weighting on a disease's ranking. These outputs aid the prioritisation and management of animal diseases by government. D2R2 was developed with wide stakeholder engagement and its design was guided by clear specifications. It uses the weighted scores of a limited number of criteria to generate impact and risk scores for each disease, and relies on evidence drawn from published material wherever possible and maintained up to date. It allows efficient use of expertise, as maintained disease profiles reduce the need for on call, reactive, expert input for policy development and enables rapid simultaneous access to the same information by multiple parties, for example during exotic disease outbreaks. The experience in developing D2R2 has been shared internationally to assist others with their development of disease prioritisation and categorisation systems. British Veterinary Association.

The Chinese version of story recall: a useful screening tool for mild cognitive impairment and Alzheimer's disease in the elderly.

PubMed

Shi, Jing; Wei, Mingqing; Tian, Jinzhou; Snowden, Julie; Zhang, Xuekai; Ni, Jingnian; Li, Ting; Jian, Wenjia; Ma, Congcong; Tong, Yanping; Liu, Jianping; Liu, Tonghua; Wang, Pengwen; Wang, Yongyan

2014-03-10

Decline in verbal episodic memory is a core feature of amnestic mild cognitive impairment (aMCI). The delayed story recall (DSR) test from the Adult Memory and Information Processing Battery (AMIPB) discriminates MCI from normal aging and predicts its conversion to Alzheimer's dementia. However, there is no study that validates the Chinese version of the DSR and reports cut-off scores in the Chinese population. A total of 631 subjects were screened in the memory clinics of Dongzhimen Hospital, Beijing University of Chinese Medicine, China. 249 were considered to have normal cognition (NC), 134 met diagnostic criteria for MCI according to the MCI Working Group of the European Consortium on Alzheimer's Disease, and 97 met criteria for probable Alzheimer's disease (AD) according to the NINCDS/ADRDA criteria, 14 exhibited vascular dementia (VaD), and 50 had a diagnosis of another type of dementia. Receiver operating characteristic (ROC) curve analyses were used to calculate the story recall cutoff score for detecting MCI and AD. Normative data in the NC group were obtained as a function of age and education. In this Chinese sample, the normative mean DSR score was 28.10 ± 8.54 in the 50-64 year-old group, 26.22 ± 8.38 in the 65-74 year-old group, and 24.42 ± 8.38 in the 75-85 year-old group. DSR performance was influenced by age and education. The DSR test had high sensitivity (0.899) and specificity (0.799) in the detection of MCI from NC using a cut-off score of 15.5. When the cutoff score was 10.5, the DSR test obtained optimal sensitivity (0.980) and specificity (0.938) in the discrimination of AD from NC. Cutoff scores and diagnostic values were calculated stratified by age and education. The Chinese version of the DSR can be used as a screening tool to detect MCI and AD with high sensitivity and specificity, and it could be used to identify people at high risk of cognitive impairment.

Comparative assessment of absolute cardiovascular disease risk characterization from non-laboratory-based risk assessment in South African populations

PubMed Central

2013-01-01

Background All rigorous primary cardiovascular disease (CVD) prevention guidelines recommend absolute CVD risk scores to identify high- and low-risk patients, but laboratory testing can be impractical in low- and middle-income countries. The purpose of this study was to compare the ranking performance of a simple, non-laboratory-based risk score to laboratory-based scores in various South African populations. Methods We calculated and compared 10-year CVD (or coronary heart disease (CHD)) risk for 14,772 adults from thirteen cross-sectional South African populations (data collected from 1987 to 2009). Risk characterization performance for the non-laboratory-based score was assessed by comparing rankings of risk with six laboratory-based scores (three versions of Framingham risk, SCORE for high- and low-risk countries, and CUORE) using Spearman rank correlation and percent of population equivalently characterized as ‘high’ or ‘low’ risk. Total 10-year non-laboratory-based risk of CVD death was also calculated for a representative cross-section from the 1998 South African Demographic Health Survey (DHS, n = 9,379) to estimate the national burden of CVD mortality risk. Results Spearman correlation coefficients for the non-laboratory-based score with the laboratory-based scores ranged from 0.88 to 0.986. Using conventional thresholds for CVD risk (10% to 20% 10-year CVD risk), 90% to 92% of men and 94% to 97% of women were equivalently characterized as ‘high’ or ‘low’ risk using the non-laboratory-based and Framingham (2008) CVD risk score. These results were robust across the six risk scores evaluated and the thirteen cross-sectional datasets, with few exceptions (lower agreement between the non-laboratory-based and Framingham (1991) CHD risk scores). Approximately 18% of adults in the DHS population were characterized as ‘high CVD risk’ (10-year CVD death risk >20%) using the non-laboratory-based score. Conclusions We found a high level of correlation between a simple, non-laboratory-based CVD risk score and commonly-used laboratory-based risk scores. The burden of CVD mortality risk was high for men and women in South Africa. The policy and clinical implications are that fast, low-cost screening tools can lead to similar risk assessment results compared to time- and resource-intensive approaches. Until setting-specific cohort studies can derive and validate country-specific risk scores, non-laboratory-based CVD risk assessment could be an effective and efficient primary CVD screening approach in South Africa. PMID:23880010

Perceived patient control over personal health information in the presence of context-specific concerns

NASA Astrophysics Data System (ADS)

Nanayakkara, Prabhashi A.

Information privacy issues have plagued the world of electronic media since its inception. This research focused mainly on factors that increase or decrease perceived patient control over personal health information (CTL) in the presence of context-specific concerns. Control agency theory was used for the paper's theoretical contributions. Personal and proxy control agencies acted as the independent variables, and context-specific concerns for information privacy (CFIP) were used as the moderator between proxy control agency, healthcare provider, and CTL. Demographic data and three control variables-- the desire for information control, privacy experience, and trust propensity--were also included in the model to gauge the contribution to CTL from external factors. Only personal control agency and desire for information control were found to impact CTL.

Population-based assessment of vision-related quality of life in corneal disease: results from the CORE study.

PubMed

Vashist, Praveen; Gupta, Noopur; Tandon, Radhika; Gupta, Sanjeev K; Dwivedi, Sadanand; Mani, Kalaivani

2016-05-01

To assess the impact of corneal disease on vision-related quality of life (VR-QoL) in a rural North Indian population. Cross-sectional, population-based study. The Corneal Opacity Rural Epidemiological (CORE) study included 12 899 participants from 25 randomly selected clusters of rural Gurgaon, Haryana, India, with the primary objective of determining the prevalence of corneal disease in the general population during July 2011 to January 2013. VR-QoL was assessed through Indian Vision Function questionnaire (IND-VFQ-33) in adult participants (aged ≥18 years) detected with corneal opacity and equal number of healthy controls (no ocular pathology with visual acuity of 6/6 binocularly) selected from the same clusters. Scores of the three subscales of IND-VFQ-33 (vision-specific mobility, psychosocial impact and visual symptoms) were computed, analysed and compared separately across various groups. Overall, 12 113 participants of all ages underwent detailed ophthalmic examination and VR-QoL was assessed in 435 cases with corneal disease and 435 controls without any ophthalmic disease. The diseased population had significantly higher scores and hence poorer VR-QoL across all three domains of vision function (scores of 28 vs 22; 6 vs 5 and 14 vs 9, respectively; p<0.0001) and the scores were inversely related with the level of visual impairment in patients with corneal disease. Patients with unilateral corneal disease also had poorer VR-QoL scores as compared with healthy controls (p<0.0001). VR-QoL is impaired in patients with corneal disease, more so in patients with corneal blindness. This is the first population-based study to document VR-QoL through IND-VFQ-33 in the Indian population with corneal disease. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Reconstructing palaeo-environmental conditions in the Baltic: A multi-proxy comparison from IODP Site M0059 (Little Belt)

NASA Astrophysics Data System (ADS)

Kotthoff, Ulrich; Andrén, Thomas; Bauersachs, Thorsten; Fanget, Anne-Sophie; Granoszewski, Wojciech; Groeneveld, Jeroen; Krupinski, Nadine; Peyron, Odile; Stepanova, Anna; Cotterill, Carol

2015-04-01

Some of the largest marine environmental impacts from ongoing global climate change are occurring in continental shelf seas and enclosed basins, including severe oxygen depletion, intensifying stratification, and increasing temperatures. In order to predict future changes in water mass conditions, it is essential to reconstruct how these conditions have changed in the past. The brackish Baltic Sea is one of the largest semi-enclosed basins worldwide, and hence provides a unique opportunity to analyse past changes. IODP Expedition 347 recovered a unique set of long sediment cores from the Baltic Sea Basin which allow new high-resolution reconstructions. The application of existing and development of new proxies in such a setting is complicated, as environmental changes often occur on much faster time scales with much larger variations. Therefore, we present a comparison of commonly used proxies to reconstruct palaeoecosystems, -temperatures, and -salinity from IODP Site M0059 in the Little Belt. The age model for Site M0059 is based on 14C dating and biostratigraphic correlation with neighbouring terrestrial pollen records. The aim of our study is to reconstruct the development of the terrestrial and marine ecosystems in the research area and the related environmental conditions, and to identify potential limitations for specific proxies. Pollen is used as proxy for vegetation development in the hinterland of the southern Baltic Sea and as land/air-temperature proxies. By comparison with dinoflagellate cysts and green algae remains from the same samples, a direct land-sea comparison is provided. The application of the modern analogues technique to pollen assemblages has previously yielded precise results for late Pleistocene and Holocene datasets including specific information on seasonality, but pollen-based reconstructions for Northern Europe may be hampered by plant migration effects. Chironomid remains are used where possible as indicators for surface water conditions during the warm season. Analyses of palynomorphs and chironomids are complemented with the analysis of lipid palaeothermometers, such as TEX86 and the long chain diol index (LDI), which both allow reconstructing variation in sea surface temperatures (SST) of the Baltic Sea. In addition, the MBT/CBT proxy is used to infer past changes in mean annual air temperatures (MAAT) and the diol index (DI) to determine variation in salinity of the Baltic Sea's surface waters over the investigated time period. The low salinity (25 psu) of the Little Belt is a potential limitation for several of the used proxies, which could lead to under-estimation of paleo-temperatures. To quantitatively and qualitatively estimate the impact of salinity, δ18O measurements (monospecific) and faunal assemblage analyses are performed on benthic foraminifera as well as ostracod faunal assemblages, which are especially sensitive to bottom water salinity changes. The results of this inter-comparison study will be useful for the reconstruction of gradients between different settings, e.g. how water column stratification developed, possibly if and how changes in seasonality occurred, and to identify the circumstances under which specific proxies may be affected by secondary impacts.

Screening for early detection of parkinsonism using a self-administered questionnaire: a cross-sectional epidemiologic study.

PubMed

Lundin, Jessica I; Checkoway, Harvey; Criswell, Susan R; Hobson, Angela J; Harris, Rachel C; Swisher, Laura M; Evanoff, Bradley A; Racette, Brad A

2014-12-01

Manganese (Mn) is a common component of welding fume. Exposure to Mn fume has been associated with parkinsonism. A simple and reliable screening tool to evaluate Mn exposed workers for neurotoxic injury would have broad occupational health application. This study investigated 490 occupational welders recruited from a trade union list. Subjects were examined by a movement disorders specialist using the Unified Parkinson Disease Rating Scale motor subsection 3 (UPDRS3). Parkinsonism, intermediate, and normal groups were defined as UPDRS3 score ≥ 15, 6-15, and <6, respectively. Workers completed a health status questionnaire (PDQ39) and a Parkinson disease (PD) Symptoms Questionnaire. Areas under receiver operator curve (AUC) were analyzed based on these scores, adjusted for age, smoking, race, gender, and neurologist, using normal as the reference. The AUC was 0.79 (95% confidence interval [CI]=0.73-0.84) for PDQ39 and 0.78 (95% CI=0.72-0.85) for PD Symptoms Questionnaire score. At 70% sensitivity, the specificity for PDQ39 score and PD Symptoms Questionnaire score for the prediction of parkinsonism was 73.1% and 80.1%, respectively. These results suggest the questionnaires have reasonably good sensitivity and specificity to predict parkinsonism in Mn exposed workers. These questionnaires could be a valuable first step in a tiered screening approach for Mn exposed workers. Copyright © 2013 Elsevier Inc. All rights reserved.

Screening for early detection of parkinsonism using a self-administered questionnaire: a cross-sectional epidemiologic study

PubMed Central

Lundin, Jessica I.; Checkoway, Harvey; Criswell, Susan R.; Hobson, Angela; Harris, Rachel C.; Swisher, Laura M.; Evanoff, Bradley A.; Racette, Brad A.

2013-01-01

Background Manganese (Mn) is a common component of welding fume. Exposure to Mn fume has been associated with parkinsonism. A simple and reliable screening tool to evaluate Mn exposed workers for neurotoxic injury would have broad occupational health application. Methods This study investigated 490 occupational welders recruited from a trade union list. Subjects were examined by a movement disorders specialist using the Unified Parkinson Disease Rating Scale motor subsection 3 (UPDRS3). Parkinsonism, intermediate, and normal groups were defined as UPDRS3 score ≥15, 6–15, and <6, respectively. Workers completed a health status questionnaire (PDQ39) and a Parkinson’s disease (PD) Symptoms Questionnaire. Areas under receiver operator curve (AUC) were analyzed based on these scores, adjusted for age, smoking, race, gender, and neurologist, using normal as the reference. Results The AUC was 0.79 (95% Confidence Interval [CI] = 0.73–0.84) for PDQ39 and 0.78 (95% CI = 0.72–0.85) for PD Symptoms Questionnaire score. At 70% sensitivity, the specificity for PDQ39 score and PD Symptoms Questionnaire score for the prediction of parkinsonism was 73.1% and 80.1%, respectively. Conclusions These results suggest the questionnaires have reasonably good sensitivity and specificity to predict parkinsonism in Mn exposed workers. These questionnaires could be a valuable first step in a tiered screening approach for Mn exposed workers. PMID:24035927

Disease-specific survival following the brachytherapy management of prostate cancer.

PubMed

Stock, Richard G; Cesaretti, Jamie A; Stone, Nelson N

2006-03-01

To determine disease-specific survival (DSS) and associated predictive factors after prostate brachytherapy. A total of 1561 patients underwent brachytherapy for prostate cancer from 1990 to 2004 (median follow-up, 3.8 years). Treatment included brachytherapy alone (n = 634), brachytherapy and hormonal therapy (n = 420), and implant and external beam therapy (n = 507). The DSS and overall survival rates at 10 years were 96% and 74%, respectively. Gleason score significantly impacted DSS, with 10-year rates of 98%, 91%, and 92% for scores of < or = 6, 7, and > or = 8, respectively (p < 0.0001). Multivariate analysis revealed that PSA status after treatment had the most significant effect on DSS. Ten-year DSS rates were 100%, 52%, and 98%, respectively for patients without PSA failure (n = 1430), failure with a doubling time (DT) < or = 10 months (n = 64), and failure with a DT > 10 months (n = 67), respectively (p < 0.0001). In patients with PSA failure, DSS rates were 30%, 67%, and 98%, for those with DT < or = 6 months, > 6-10 months, and > 10 months, respectively (p < 0.0001). The 10-year DSS rate supports the efficacy of brachytherapy. Patients dying with disease within 10 years after treatment harbor inherently aggressive cancer with high Gleason scores and short DT.

Comparison of FIB-4 index, NAFLD fibrosis score and BARD score for prediction of advanced fibrosis in adult patients with non-alcoholic fatty liver disease: A meta-analysis study.

PubMed

Sun, Wenjing; Cui, Hongli; Li, Ning; Wei, Yanling; Lai, Shujie; Yang, Yang; Yin, Xinru; Chen, Dong-Feng

2016-08-01

Non-alcoholic fatty liver disease (NAFLD)-related advanced hepatic fibrosis is associated with liver and cardiovascular morbidity and mortality. This study aims to compare the FIB-4 index, NAFLD fibrosis score (NFS) and BARD score for prediction of advanced liver fibrosis. Pooled sensitivity, specificity, diagnostic odds ratio (DOR), summary receiver-operator curves (SROC) and Spearman's rank correlation coefficient were used to examine the accuracy of each non-invasive scoring system for predicting NAFLD-related advanced fibrosis. Four studies with 1038 adult patients were included in this meta-analysis. A total of 135 patients (13.0%) had advanced fibrosis. In the FIB-4 index group, pooled sensitivity and specificity with 95% confidence interval (CI), and the area under the ROC (AUROC) were 0.844 (0.772-0.901), 0.685 (0.654-0.716) and 0.8496 ± 0.0680, respectively, at a cut-off of 1.30. At a threshold of 3.25, the same parameters were 0.38 (0.30-0.47), 0.96 (0.95-0.98) and 0.8445 ± 0.0981. At a cut-off of -1.455, values were 0.77 (0.69-0.84), 0.70 (0.67-0.73) and 0.8355 ± 0.0667, respectively. At a 0.676 cut-off, pooled sensitivity and specificity with 95% CI were 0.27 (0.19-0.35) and 0.98 (0.96-0.98), respectively; and the AUROC was 0.647 ± 0.2208. In the BARD score group, pooled sensitivity and specificity with 95% CI were 0.74 (0.66-0.81) and 0.66 (0.63-0.69), respectively; and the AUROC was 0.7625 ± 0.0285. FIB-4 index with a 1.30 cut-off has better diagnostic accuracy than the FIB-4 index with a 3.25 cut-off, NFS and BARD score, despite showing its limited value for predicting NAFLD-related advanced fibrosis. © 2016 The Japan Society of Hepatology.

An empirical comparison of the measurement properties of the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U for older people in residential care.

PubMed

Easton, Tiffany; Milte, Rachel; Crotty, Maria; Ratcliffe, Julie

2018-05-01

This study aimed to empirically compare the measurement properties of self-reported and proxy-reported (in cases of severe cognitive impairment) generic (EQ-5D-5L) and condition-specific (DEMQOL-U and DEMQOL-Proxy-U) preference-based HRQoL instruments in residential care, where the population is characterised by older people with high rates of cognitive impairment, dementia and disability. Participants were recruited from seventeen residential care facilities across four Australian states. One hundred and forty-three participants self-completed the EQ-5D-5L and the DEMQOL-U while three hundred and eight-seven proxy completed (due to the presence of severe dementia) the EQ-5D-5L and DEMQOL-Proxy-U. The convergent validity of the outcome measures and known group validity relative to a series of clinical outcome measures were assessed. Results satisfy convergent validity among the outcome measures. EQ-5D-5L and DEMQOL-U utilities were found to be significantly correlated with each other (p < 0.01) as were EQ-5D-5L and DEMQOL-Proxy-U utilities (p < 0.01). Both self-reported and proxy-reported EQ-5D-5L utilities demonstrated strong known group validity in relation to clinically recognised thresholds of cognition and physical functioning, while in contrast neither DEMQOL-U nor DEMQOL-Proxy-U demonstrated this association. The findings suggest that the EQ-5D-5L, DEMQOL-U and DEMQOL-Proxy-U capture distinct aspects of HRQoL for this population. The measurement and valuation of HRQoL form an essential component of economic evaluation in residential care. However, high levels of cognitive impairment may preclude self-completion for a majority. Further research is needed to determine cognition thresholds beyond which an individual is unable to reliably self-report their own health-related quality of life.

Quality of life in patients with proton-treated pediatric medulloblastoma: Results of a prospective assessment with 5-year follow-up.

PubMed

Kamran, Sophia C; Goldberg, Saveli I; Kuhlthau, Karen A; Lawell, Miranda P; Weyman, Elizabeth A; Gallotto, Sara L; Hess, Clayton B; Huang, Mary S; Friedmann, Alison M; Abrams, Annah N; MacDonald, Shannon M; Pulsifer, Margaret B; Tarbell, Nancy J; Ebb, David H; Yock, Torunn I

2018-06-15

To the authors' knowledge, health-related quality of life (HRQOL) outcomes are not well described in patients with medulloblastoma. The use of proton radiotherapy (RT) may translate into an improved HRQOL. In the current study, the authors report long-term HRQOL in patients with proton-treated pediatric medulloblastoma. The current study was a prospective cohort HRQOL study of patients with medulloblastoma who were treated with proton RT and enrolled between August 5, 2002, and October 8, 2015. Both child report and parent-proxy report Pediatric Quality of Life Inventory (PedsQL) surveys were collected at baseline during RT and annually thereafter (score range on surveys of 0-100, with higher scores indicating better HRQOL). Patients were dichotomized by clinical/treatment variables and subgroups were compared. Mixed-model analysis was performed to determine the longitudinal trajectory of PedsQL scores. The Student t test was used to compare long-term HRQOL measures with published means from a healthy child population. Survey data were evaluable for 116 patients with a median follow-up of 5 years (range, 1-10.6 years); the median age at the time of diagnosis was 7.6 years (range, 2.1-18.1 years). At baseline, children reported a total core score (TCS) of 65.9, which increased by 1.8 points annually (P<.001); parents reported a TCS of 59.1, which increased by 2.0 points annually. Posterior fossa syndrome adversely affected baseline scores, but these scores significantly improved with time. At the time of last follow-up, children reported a TCS of 76.3, which was 3.3 points lower than that of healthy children (P = .09); parents reported a TCS of 69, which was 11.9 points lower than that of parents of healthy children (P<.001). Increased follow-up time from diagnosis correlated with improved HRQOL scores. HRQOL scores appear to increase over time after treatment in children treated with proton RT for medulloblastoma but remain lower compared with those of parent-proxy reports as well as published means from a healthy normative sample of children. Additional follow-up may translate into continued improvements in HRQOL. Cancer 2018. © 2018 American Cancer Society. © 2018 American Cancer Society.

Ethnicity influences disease characteristics and symptom severity in allergic rhinitis patients in Malaysia.

PubMed

Amini, Peyman; Abdullah, Maha; Seng, Lee Sing; Karunakaran, Thanusha; Hani, Norzhafarina; Bakar, Saraiza Abu; Latiff, Amir Hamzah Abdul; Fong, Seow Heng; Yeow, Yap Yoke

2016-06-01

The number of available reports regarding the influence of ethnicity on clinical features of allergic rhinitis (AR), especially disease severity in tropical climates, is limited. We aimed to compare clinical parameters and disease severity in AR patients of different ethnicities. Malay, Chinese, and Indian AR patients (n = 138) with confirmed sensitivity to Dermatophagoides pteronyssinus, Dematophagoides farinae, and Blomia tropicalis were tested for mite-specific immunoglobulin E (sIgE) levels. A detailed questionnaire was used to collect data on nasal symptom score (NSS), ocular symptom score (OSS), sum of symptoms score (SSS), quality of life score (QLS), symptomatic control score (SCS), and total sum of scores (TSS) and correlate the derived data with patients' demography, mite-polysensitivity, and sIgE levels. AR-related symptoms were most severe in Malays and least in Chinese (p < 0.01). Age (r = 0.516 to 0.673, p < 0.05) and duration of AR (r = 0.635 to 0.726, p < 0.01) correlated positively with severity domains (NSS, SSS, QLS, and TSS) in Chinese. Duration of concurrent allergies was highest in Malays (p < 0.05). Polysensitivity predicted increased sIgE levels in Malays (r = 0.464 to 0.551, p < 0.01) and Indians (r = 0.541 to 0.645, p < 0.05) but affected NSS, SSS, and TSS only in Indians (r = 0.216 to 0.376, p < 0.05). sIgE levels were lowest among Chinese but correlated strongly with NSS, OSS, SSS, and TSS (r = 0408 to 0.898, p < 0.05). Clinical parameters in AR may be influenced by race. Symptoms were most severe among Malays but did not correlate with other variables examined. Although Indian ethnicity did not impact disease severity, duration of concurrent allergies and mite-polysensitivity was associated with more severe disease. Age, duration of disease, and sIgE levels may be useful indicators of disease severity in Chinese. © 2016 ARS-AAOA, LLC.

Measurement of COPD Severity Using a Survey-Based Score

PubMed Central

Omachi, Theodore A.; Katz, Patricia P.; Yelin, Edward H.; Iribarren, Carlos; Blanc, Paul D.

2010-01-01

Background: A comprehensive survey-based COPD severity score has usefulness for epidemiologic and health outcomes research. We previously developed and validated the survey-based COPD Severity Score without using lung function or other physiologic measurements. In this study, we aimed to further validate the severity score in a different COPD cohort and using a combination of patient-reported and objective physiologic measurements. Methods: Using data from the Function, Living, Outcomes, and Work cohort study of COPD, we evaluated the concurrent and predictive validity of the COPD Severity Score among 1,202 subjects. The survey instrument is a 35-point score based on symptoms, medication and oxygen use, and prior hospitalization or intubation for COPD. Subjects were systemically assessed using structured telephone survey, spirometry, and 6-min walk testing. Results: We found evidence to support concurrent validity of the score. Higher COPD Severity Score values were associated with poorer FEV1 (r = −0.38), FEV1% predicted (r = −0.40), Body mass, Obstruction, Dyspnea, Exercise Index (r = 0.57), and distance walked in 6 min (r = −0.43) (P < .0001 in all cases). Greater COPD severity was also related to poorer generic physical health status (r = −0.49) and disease-specific health-related quality of life (r = 0.57) (P < .0001). The score also demonstrated predictive validity. It was also associated with a greater prospective risk of acute exacerbation of COPD defined as ED visits (hazard ratio [HR], 1.31; 95% CI, 1.24-1.39), hospitalizations (HR, 1.59; 95% CI, 1.44-1.75), and either measure of hospital-based care for COPD (HR, 1.34; 95% CI, 1.26-1.41) (P < .0001 in all cases). Conclusion: The COPD Severity Score is a valid survey-based measure of disease-specific severity, both in terms of concurrent and predictive validity. The score is a psychometrically sound instrument for use in epidemiologic and outcomes research in COPD. PMID:20040611

The COPD Assessment Test: Can It Discriminate Across COPD Subpopulations?

PubMed

Gupta, Nisha; Pinto, Lancelot; Benedetti, Andrea; Li, Pei Zhi; Tan, Wan C; Aaron, Shawn D; Chapman, Kenneth R; FitzGerald, J Mark; Hernandez, Paul; Marciniuk, Darcy D; Maltais, François; O'Donnell, Denis E; Sin, Don; Walker, Brandie L; Bourbeau, Jean

2016-11-01

The COPD Assessment Test (CAT) is a valid disease-specific questionnaire measuring health status. However, knowledge concerning its use regarding patient and disease characteristics remains limited. Our main objective was to assess the degree to which the CAT score varies and can discriminate between specific patient population groups. The Canadian Cohort Obstructive Lung Disease (CanCOLD) is a random-sampled, population-based, multicenter, prospective cohort that includes subjects with COPD (Global Initiative for Chronic Obstructive Lung Disease [GOLD] classifications 1 to 3). The CAT questionnaire was administered at three visits (baseline, 1.5 years, and 3 years). The CAT total score was determined for sex, age groups, smoking status, GOLD classification, exacerbations, and comorbidities. A total of 716 subjects with COPD were included in the analysis. The majority of subjects (72.5%) were not previously diagnosed with COPD. The mean FEV 1 /FVC ratio was 61.1 ± 8.1%, with a mean FEV 1 % predicted of 82.3 ± 19.3%. The mean CAT scores were 5.8 ± 5.0, 9.6 ± 6.7, and 16.1 ± 10.0 for GOLD 1, 2, and 3+ classifications, respectively. Higher CAT scores were observed in women, current smokers, ever-smokers, and subjects with a previous diagnosis of COPD. The CAT was also able to distinguish between subjects who experience exacerbations vs those who had no exacerbation. These results suggest that the CAT, originally designed for use in clinically symptomatic patients with COPD, can also be used in individuals with mild airflow obstruction and newly diagnosed COPD. In addition, the CAT was able to discriminate between sexes and subjects who experience frequent and infrequent exacerbations. ClinicalTrials.gov; No.: NCT00920348; Study ID No.: IRO-93326. Crown Copyright © 2016. Published by Elsevier Inc. All rights reserved.

Verbal memory declines more in female patients with Parkinson's disease: the importance of gender-corrected normative data.

PubMed

Fengler, S; Roeske, S; Heber, I; Reetz, K; Schulz, J B; Riedel, O; Wittchen, H U; Storch, A; Linse, K; Baudrexel, S; Hilker, R; Mollenhauer, B; Witt, K; Schmidt, N; Balzer-Geldsetzer, M; Dams, J; Dodel, R; Gräber, S; Pilotto, A; Petrelli, A; Fünkele, S; Kassubek, J; Kalbe, E

2016-08-01

Data on gender-specific profiles of cognitive functions in patients with Parkinson's disease (PD) are rare and inconsistent, and possible disease-confounding factors have been insufficiently considered. The LANDSCAPE study on cognition in PD enrolled 656 PD patients (267 without cognitive impairment, 66% male; 292 with mild cognitive impairment, 69% male; 97 with PD dementia, 69% male). Raw values and age-, education-, and gender-corrected Z scores of a neuropsychological test battery (CERAD-Plus) were compared between genders. Motor symptoms, disease duration, l-dopa equivalent daily dose, depression - and additionally age and education for the raw value analysis - were taken as covariates. Raw-score analysis replicated results of previous studies in that female PD patients were superior in verbal memory (word list learning, p = 0.02; recall, p = 0.03), while men outperformed women in visuoconstruction (p = 0.002) and figural memory (p = 0.005). In contrast, gender-corrected Z scores showed that men were superior in verbal memory (word list learning, p = 0.02; recall, p = 0.02; recognition, p = 0.04), while no difference was found for visuospatial tests. This picture could be observed both in the overall analysis of PD patients as well as in a differentiated group analysis. Normative data corrected for gender and other sociodemographic variables are relevant, since they may elucidate a markedly different cognitive profile compared to raw scores. Our study also suggests that verbal memory decline is stronger in women than in men with PD. Future studies are needed to replicate these findings, examine the progression of gender-specific cognitive decline in PD and define different underlying mechanisms of this dysfunction.

Multidimensional severity assessment in bronchiectasis: an analysis of seven European cohorts

PubMed Central

McDonnell, M J; Aliberti, S; Goeminne, P C; Dimakou, K; Zucchetti, S C; Davidson, J; Ward, C; Laffey, J G; Finch, S; Pesci, A; Dupont, L J; Fardon, T C; Skrbic, D; Obradovic, D; Cowman, S; Loebinger, M R; Rutherford, R M; De Soyza, A; Chalmers, J D

2016-01-01

Introduction Bronchiectasis is a multidimensional disease associated with substantial morbidity and mortality. Two disease-specific clinical prediction tools have been developed, the Bronchiectasis Severity Index (BSI) and the FACED score, both of which stratify patients into severity risk categories to predict the probability of mortality. Methods We aimed to compare the predictive utility of BSI and FACED in assessing clinically relevant disease outcomes across seven European cohorts independent of their original validation studies. Results The combined cohorts totalled 1612. Pooled analysis showed that both scores had a good discriminatory predictive value for mortality (pooled area under the curve (AUC) 0.76, 95% CI 0.74 to 0.78 for both scores) with the BSI demonstrating a higher sensitivity (65% vs 28%) but lower specificity (70% vs 93%) compared with the FACED score. Calibration analysis suggested that the BSI performed consistently well across all cohorts, while FACED consistently overestimated mortality in ‘severe’ patients (pooled OR 0.33 (0.23 to 0.48), p<0.0001). The BSI accurately predicted hospitalisations (pooled AUC 0.82, 95% CI 0.78 to 0.84), exacerbations, quality of life (QoL) and respiratory symptoms across all risk categories. FACED had poor discrimination for hospital admissions (pooled AUC 0.65, 95% CI 0.63 to 0.67) with low sensitivity at 16% and did not consistently predict future risk of exacerbations, QoL or respiratory symptoms. No association was observed with FACED and 6 min walk distance (6MWD) or lung function decline. Conclusion The BSI accurately predicts mortality, hospital admissions, exacerbations, QoL, respiratory symptoms, 6MWD and lung function decline in bronchiectasis, providing a clinically relevant evaluation of disease severity. PMID:27516225

Examining the relationship between the prevalence of guns and homicide rates in the USA using a new and improved state-level gun ownership proxy.

PubMed

Siegel, Michael; Ross, Craig S; King, Charles

2014-12-01

Determining the relationship between gun ownership levels and firearm homicide rates is critical to inform public health policy. Previous research has shown that state-level gun ownership, as measured by a widely used proxy, is positively associated with firearm homicide rates. A newly developed proxy measure that incorporates the hunting license rate in addition to the proportion of firearm suicides correlates more highly with state-level gun ownership. To corroborate previous research, we used this new proxy to estimate the association of state-level gun ownership with total, firearm, and non-firearm homicides. Using state-specific data for the years 1981-2010, we modelled these rates as a function of gun ownership level, controlling for potential confounding factors. We used a negative binomial regression model and accounted for clustering of observations among states. We found that state-level gun ownership as measured by the new proxy, is significantly associated with firearm and total homicides but not with non-firearm homicides. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Gridded uncertainty in fossil fuel carbon dioxide emission maps, a CDIAC example

DOE PAGES

Andres, Robert J.; Boden, Thomas A.; Higdon, David M.

2016-12-05

Due to a current lack of physical measurements at appropriate spatial and temporal scales, all current global maps and distributions of fossil fuel carbon dioxide (FFCO2) emissions use one or more proxies to distribute those emissions. These proxies and distribution schemes introduce additional uncertainty into these maps. This paper examines the uncertainty associated with the magnitude of gridded FFCO2 emissions. This uncertainty is gridded at the same spatial and temporal scales as the mass magnitude maps. This gridded uncertainty includes uncertainty contributions from the spatial, temporal, proxy, and magnitude components used to create the magnitude map of FFCO2 emissions. Throughoutmore » this process, when assumptions had to be made or expert judgment employed, the general tendency in most cases was toward overestimating or increasing the magnitude of uncertainty. The results of the uncertainty analysis reveal a range of 4–190 %, with an average of 120 % (2 σ) for populated and FFCO2-emitting grid spaces over annual timescales. This paper also describes a methodological change specific to the creation of the Carbon Dioxide Information Analysis Center (CDIAC) FFCO2 emission maps: the change from a temporally fixed population proxy to a temporally varying population proxy.« less

Gridded uncertainty in fossil fuel carbon dioxide emission maps, a CDIAC example

DOE Office of Scientific and Technical Information (OSTI.GOV)

Andres, Robert J.; Boden, Thomas A.; Higdon, David M.

Due to a current lack of physical measurements at appropriate spatial and temporal scales, all current global maps and distributions of fossil fuel carbon dioxide (FFCO2) emissions use one or more proxies to distribute those emissions. These proxies and distribution schemes introduce additional uncertainty into these maps. This paper examines the uncertainty associated with the magnitude of gridded FFCO2 emissions. This uncertainty is gridded at the same spatial and temporal scales as the mass magnitude maps. This gridded uncertainty includes uncertainty contributions from the spatial, temporal, proxy, and magnitude components used to create the magnitude map of FFCO2 emissions. Throughoutmore » this process, when assumptions had to be made or expert judgment employed, the general tendency in most cases was toward overestimating or increasing the magnitude of uncertainty. The results of the uncertainty analysis reveal a range of 4–190 %, with an average of 120 % (2 σ) for populated and FFCO2-emitting grid spaces over annual timescales. This paper also describes a methodological change specific to the creation of the Carbon Dioxide Information Analysis Center (CDIAC) FFCO2 emission maps: the change from a temporally fixed population proxy to a temporally varying population proxy.« less

Gridded uncertainty in fossil fuel carbon dioxide emission maps, a CDIAC example

NASA Astrophysics Data System (ADS)

Andres, Robert J.; Boden, Thomas A.; Higdon, David M.

2016-12-01

Due to a current lack of physical measurements at appropriate spatial and temporal scales, all current global maps and distributions of fossil fuel carbon dioxide (FFCO2) emissions use one or more proxies to distribute those emissions. These proxies and distribution schemes introduce additional uncertainty into these maps. This paper examines the uncertainty associated with the magnitude of gridded FFCO2 emissions. This uncertainty is gridded at the same spatial and temporal scales as the mass magnitude maps. This gridded uncertainty includes uncertainty contributions from the spatial, temporal, proxy, and magnitude components used to create the magnitude map of FFCO2 emissions. Throughout this process, when assumptions had to be made or expert judgment employed, the general tendency in most cases was toward overestimating or increasing the magnitude of uncertainty. The results of the uncertainty analysis reveal a range of 4-190 %, with an average of 120 % (2σ) for populated and FFCO2-emitting grid spaces over annual timescales. This paper also describes a methodological change specific to the creation of the Carbon Dioxide Information Analysis Center (CDIAC) FFCO2 emission maps: the change from a temporally fixed population proxy to a temporally varying population proxy.

Two-step epigenetic Mendelian randomization: a strategy for establishing the causal role of epigenetic processes in pathways to disease

PubMed Central

Relton, Caroline L; Davey Smith, George

2012-01-01

The burgeoning interest in the field of epigenetics has precipitated the need to develop approaches to strengthen causal inference when considering the role of epigenetic mediators of environmental exposures on disease risk. Epigenetic markers, like any other molecular biomarker, are vulnerable to confounding and reverse causation. Here, we present a strategy, based on the well-established framework of Mendelian randomization, to interrogate the causal relationships between exposure, DNA methylation and outcome. The two-step approach first uses a genetic proxy for the exposure of interest to assess the causal relationship between exposure and methylation. A second step then utilizes a genetic proxy for DNA methylation to interrogate the causal relationship between DNA methylation and outcome. The rationale, origins, methodology, advantages and limitations of this novel strategy are presented. PMID:22422451

Subjective Fatigue in Children With Hearing Loss Assessed Using Self- and Parent-Proxy Report

PubMed Central

Gustafson, Samantha J.; Lancaster, Hope; Cho, Sun-Joo; Camarata, Stephen; Bess, Fred H.

2017-01-01

Purpose The primary purposes of this study were to examine the effects of hearing loss and respondent type (self- vs. parent-proxy report) on subjective fatigue in children. We also examined associations between child-specific factors and fatigue ratings. Method Subjective fatigue was assessed using the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL-MFS; Varni, Burwinkle, Katz, Meeske, & Dickinson, 2002). We compared self- and parent-proxy ratings from 60 children with hearing loss (CHL) and 43 children with normal hearing (CNH). The children ranged in age from 6 to 12 years. Results School-age CHL experienced more overall and cognitive fatigue than CNH, although the differences were smaller than previously reported. Parent-proxy report was not strongly associated with child self-report, and parents tended to underestimate their child's fatigue, particularly sleep/rest fatigue. Language ability was also associated with subjective fatigue. For CHL and CNH, as language abilities increased, cognitive fatigue decreased. Conclusions School-age CHL experience more subjective fatigue than CNH. The poor association between parent-proxy and child reports suggests that the parent-proxy version of the PedsQL-MFS should not be used in isolation when assessing fatigue in school-age children. Future research should examine how language abilities may modulate fatigue and its potential academic consequences in CHL. PMID:29049623

Reaction Time is a Marker of Early Cognitive and Behavioral Alterations in Pure Cerebral Small Vessel Disease.

PubMed

Jouvent, Eric; Reyes, Sonia; De Guio, François; Chabriat, Hugues

2015-01-01

The assessment of early and subtle cognitive and behavioral effects of cerebral small vessel disease (SVD) requires specific and long-lasting evaluations performed by experienced neuropsychologists. Simpler tools would be helpful for daily clinical practice. To determine whether a simple reaction time task that lasts 5 minutes and can be performed without external supervision on any tablet or laptop can be used as a proxy of early cognitive and behavioral alterations in CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy), a monogenic form of pure SVD related to NOTCH3 mutations. Twenty-two genetically confirmed patients with CADASIL having preserved global cognitive abilities and without disability (MMSE >24 and modified Rankin's scale ≤1) were compared to 29 age-and-gender matched controls to determine group differences according to: 1) conventional neuropsychological and behavioral testing; 2) a computerized battery evaluating reaction time, processing speed, and executive functions. In a second step, correlations between reaction time and cognitive and behavioral alterations detected using both conventional and computerized testing were tested in patients. Reaction time was significantly higher in patients than in controls (mean in patients: 283 ms - in controls: 254 ms, p = 0.03). In patients, reaction time was significantly associated with conventional and chronometric tests of executive functions, working memory, and apathy. Reaction time obtained using a very simple task may serve as a proxy of early cognitive and behavioral alterations in SVD and could be easily used in daily clinical practice.

Investigating the Association Between Periodontal Disease and Risk of Pancreatic Cancer.

PubMed

Chang, Jeffrey S; Tsai, Chia-Rung; Chen, Li-Tzong; Shan, Yan-Shen

2016-01-01

Periodontal disease (PD) is increasingly recognized as an emerging risk factor for various systemic diseases, including diabetes, cardiovascular diseases, and cancer. The current study examined the association between PD (periodontitis, gingivitis, and others) and pancreatic cancer. A total of 139,805 subjects with PD and 75,085 subjects without PD were identified from the National Health Insurance Research Database of Taiwan. Cox proportional hazards regression was performed to compare the incidence of pancreatic cancer between the 2 groups. Periodontal disease was positively associated with pancreatic cancer risk (hazard ratio [HR], 1.55; 95% confidence interval [CI], 1.02-2.33). This positive association occurred predominantly among those aged 65 years or older (HR, 2.17; 95% CI, 1.03-4.57) and was not observed among those aged younger than 65 years (HR, 0.83; 95% CI, 0.52-1.34). Further analysis showed that PD is a risk factor for pancreatic cancer independent of diabetes, hyperlipidemia, allergies, viral hepatitis, peptic ulcer, pancreatitis, chronic obstructive pulmonary disease (as a proxy for cigarette smoking), and alcoholic-related conditions (as a proxy for alcohol drinking). Our results indicated a significantly positive association between PD and risk of pancreatic cancer. The underlying biological mechanisms for the positive association between PD and pancreatic cancer require further investigation.

Polygenic Risk Score for Alzheimer's Disease: Implications for Memory Performance and Hippocampal Volumes in Early Life.

PubMed

Axelrud, Luiza K; Santoro, Marcos L; Pine, Daniel S; Talarico, Fernanda; Gadelha, Ary; Manfro, Gisele G; Pan, Pedro M; Jackowski, Andrea; Picon, Felipe; Brietzke, Elisa; Grassi-Oliveira, Rodrigo; Bressan, Rodrigo A; Miguel, Eurípedes C; Rohde, Luis A; Hakonarson, Hakon; Pausova, Zdenka; Belangero, Sintia; Paus, Tomas; Salum, Giovanni A

2018-06-01

Alzheimer's disease is a heritable neurodegenerative disorder in which early-life precursors may manifest in cognition and brain structure. The authors evaluate this possibility by examining, in youths, associations among polygenic risk score for Alzheimer's disease, cognitive abilities, and hippocampal volume. Participants were children 6-14 years of age in two Brazilian cities, constituting the discovery (N=364) and replication samples (N=352). As an additional replication, data from a Canadian sample (N=1,029), with distinct tasks, MRI protocol, and genetic risk, were included. Cognitive tests quantified memory and executive function. Reading and writing abilities were assessed by standardized tests. Hippocampal volumes were derived from the Multiple Automatically Generated Templates (MAGeT) multi-atlas segmentation brain algorithm. Genetic risk for Alzheimer's disease was quantified using summary statistics from the International Genomics of Alzheimer's Project. Analyses showed that for the Brazilian discovery sample, each one-unit increase in z-score for Alzheimer's polygenic risk score significantly predicted a 0.185 decrement in z-score for immediate recall and a 0.282 decrement for delayed recall. Findings were similar for the Brazilian replication sample (immediate and delayed recall, β=-0.259 and β=-0.232, both significant). Quantile regressions showed lower hippocampal volumes bilaterally for individuals with high polygenic risk scores. Associations fell short of significance for the Canadian sample. Genetic risk for Alzheimer's disease may affect early-life cognition and hippocampal volumes, as shown in two independent samples. These data support previous evidence that some forms of late-life dementia may represent developmental conditions with roots in childhood. This result may vary depending on a sample's genetic risk and may be specific to some types of memory tasks.

Factors associated with generic health-related quality of life (HRQOL) in patients with chronic obstructive pulmonary disease (COPD): a cross-sectional study.

PubMed

Brandl, Magdalena; Böhmer, Merle M; Brandstetter, Susanne; Finger, Tamara; Fischer, Wiebke; Pfeifer, Michael; Apfelbacher, Christian

2018-02-01

Health-related quality of life (HRQOL) is impaired in chronic obstructive pulmonary disease (COPD) patients, but determining factors for HRQOL are still not unequivocal. This study measures HRQOL among patients with COPD and aims to determine factors associated with HRQOL. Data for cross-sectional analyses were obtained from the baseline of a cohort study. The study population includes adult COPD patients (disease duration ≥3 months), recruited from primary and secondary care settings in Germany, without acute psychiatric/neurologic disease (exception: affective/ anxiety disorders). HRQOL was assessed using the Short-Form 12 (SF-12) Health Survey Questionnaire, comprising a physical and mental component. Independent variables encompass socio-demographic, disease-specific, treatment-related and psychological factors. Multivariable linear regression analyses were conducted. In total, 206 COPD patients (60.7% male; mean age: 65.3 years) took part in the study. In multivariable analysis, the physical component score showed a significant negative association with the COPD Assessment Test (CAT) (P<0.001) and a higher total number of prescribed medications (P=0.001). A higher forced expiratory volume in 1 second (FEV1) value in percent predicted was significantly related to the physical component score in a positive manner (P=0.006). The mental component score was significantly associated with elevated patient-reported symptoms of anxiety (P=0.002) or depression (P<0.001), measured by the hospital anxiety and depression scale (HADS) in a negative way. Like for the physical component score (P<0.001), a worse CAT score was significantly associated with a lower mental component score (P=0.033). Focusing on patient reported outcomes and screening for depression and anxiety with potential successive treatment might be promising approaches to improve HRQOL in patients with COPD.

The need for an objective measure in septorhinoplasty surgery: are we any closer to finding an answer?

PubMed

Andrews, P J; Choudhury, N; Takhar, A; Poirrier, A L; Jacques, T; Randhawa, P S

2015-12-01

To assess the reliability of nasal inspiratory peak flow (NIPF) in providing a clinically accurate objective measure following functional septorhinoplasty by comparing it to the validated disease-specific quality-of-life questionnaire, SNOT-22. Studies so far have demonstrated poor correlation between bilateral NIPF and symptom-specific nasal questionnaires following septorhinoplasty. To perform a prospective comparative analysis between NIPF and the validated disease-specific quality-of-life questionnaire SNOT-22 and to determine whether a correlation exists following septorhinoplasty surgery. The Royal National Throat Nose and Ear Hospital, London. A total of 122 patients (78 males, 44 females; mean age 33.5 ± 12.2 years) were recruited from the senior authors rhinology clinic and underwent functional septorhinoplasty surgery. Preoperative and postoperative nasal inspiratory peak flow (NIPF) measurements were performed in addition to the completion of three subjective quality-of-life and symptom assessment tool questionnaires; Sinonasal Outcome Test 22 (SNOT-22), Nasal Obstruction Symptom Evaluation (NOSE) and Visual Analogue Scale (VAS: 0-10). The mean preoperative NIPF was 88.2 L/min, and the postoperative value was 101.6 L/min and showed a significant improvement following surgery (P = 0.0064). The mean total SNOT-22 score improved significantly from 48.6 to 26.6 (P < 0.0001); the NOSE score from 14.1 to 6.6 (P < 0.0001); and the Visual Analogue Scale (VAS) blockage score from 6.9 to 3.2 (P < 0.0001). All individual domains assessed showed improvements postoperatively, but no correlation was found between the NIPF and SNOT-22 score. Equally, we did not find a correlation between NIPF and the symptom-specific NOSE questionnaire and the nasal blockage domain on the Visual Analogue Scale (VAS) scale. We have demonstrated that NIPF does not correlate with the SNOT-22 disease-specific questionnaire, although both outcomes significantly improve postoperatively. At present, we are still lacking a clinically accurate objective measure of nasal function for the evaluation of patients undergoing septorhinoplasty surgery. © 2015 John Wiley & Sons Ltd.

Prevalence of overestimation or underestimation of the functional capacity using MRC score as compared to 6-minute walk test in patients with cardio-respiratory disorders.

PubMed

Callens, Etienne; Graba, Sémia; Essalhi, Mohamed; Gillet-Juvin, Karine; Chevalier-Bidaud, Brigitte; Chenu, Romain; Mahut, Bruno; Delclaux, Christophe

2014-09-01

The first objective of our study was to assess whether patients diagnosed with cardio-respiratory disorders report overestimation or underestimation on recall (Medical Research Council (MRC) dyspnea scale) of their true functional capacity (walked distance during a 6-minute walk test (6MWT)). The second objective was to assess whether the measurement of breathlessness at the end of a 6MWT (Borg score) may help to identify dyspneic patients on recall. The 6MWTs of 746 patients aged from 40 to 80 years who were diagnosed with either chronic obstructive pulmonary disease (COPD, n = 355), diffuse parenchymal lung disease (n = 140), pulmonary vascular diseases (n = 188) or congestive heart failure (n = 63) were selected from a prospective Clinical Database Warehouse. The percentage of patients who overestimated (MRC ≤ 2 with distance < lower limit of normal (LLN), 61/746, 8%; 95% confidence interval (CI): 6 to 10%) or underestimated (MRC > 2 with distance ≥LLN, 121/746, 16%; 95%CI: 14 to 19%) on recall their capacity was elevated. The overestimation seemed related to self-limitation, while the underestimation seemed related to patients who "work through" their breathing discomfort. These two latter groups of patients were mainly diagnosed with COPD. A Borg dyspnea score >3 (upper limit of normal) at the end of the 6MWT had 84% specificity for the prediction of a MRC score >1. Almost one fourth of patients suffering from cardio-pulmonary disorders overestimate or underestimate on recall their true functional capacity. An elevated Borg dyspnea score at the end of the 6MWT has a good specificity to predict dyspnea on recall.

Diagnostic accuracy of the Patient Health Questionnaire-9 for assessment of depression in type II diabetes mellitus and/or coronary heart disease in primary care.

PubMed

van der Zwaan, G Lennart; van Dijk, Susan E M; Adriaanse, Marcel C; van Marwijk, Harm W J; van Tulder, Maurits W; Pols, Alide D; Bosmans, Judith E

2016-01-15

Depression is common among type 2 diabetes mellitus (DM2)/coronary heart disease (CHD) patients and is associated with adverse health effects. A promising strategy to reduce burden of disease is to identify patients at risk for depression in order to offer indicated prevention. This study aims to assess the diagnostic accuracy of the Patient Health Questionnaire-9 (PHQ-9) to be used as a tool to identify high risk patients. In this cross-sectional study, 586 consecutive DM2/CHD patients aged >18 were recruited through 23 general practices. PHQ-9 outcomes were compared to the Mini International Neuropsychiatric Interview (MINI), which was considered the reference standard. Diagnostic accuracy was evaluated for minor and major depression, comparing both sum- and algorithm based PHQ-9 scores. For minor depression, the optimal cut-off score was 8 (sensitivity 71%, specificity 71% and an AUC of 0.74). For major depression, the optimal cut-off score was 10 resulting in a sensitivity of 84%, a specificity of 82%, and an AUC of 0.88. The positive predictive value of the PHQ-9 algorithm for diagnosing minor and major depression was 25% and 33%, respectively. Two main limitations apply. MINI Interviewers were not blinded for PHQ-9 scores and less than 10% of all invited patients could be included in the analyses. This could have resulted in biased outcomes. The PHQ-9 sum score performs well in identifying patients at high risk of minor and major depression. However, the PHQ-9 showed suboptimal results for diagnostic purposes. Therefore, it is recommended to combine the use of the PHQ-9 with further diagnostics to identify depression. Copyright © 2015 Elsevier B.V. All rights reserved.

Assessing Decline: Visualising Progression in Huntington's Disease using a Clinical Dashboard with Enroll-HD Data.

PubMed

Walker, Thomas; Ghosh, Boyd; Kipps, Christopher

2017-01-01

In Huntington's disease (HD), it remains unclear how symptom severity and rate of symptomatic change relates to age and CAG repeat number (CAGn). It is often difficult for clinicians to assess whether an affected individual's symptoms are progressing at a similar rate to their affected peers, limiting their ability to intervene at the most appropriate time. To develop a clinical dashboard that compares an individual's total motor score (TMS), total functional capacity (TFC) and symbol digit modality test (SDMT) scores against a global cohort, controlling for age and CAGn. The dashboard could then be used by clinicians to identify individuals progressing at a disproportionate rate to his or her peers. Annualised longitudinal clinical assessment scores from the Enroll-HD dataset were used to generate decline trajectories of the global cohort, allowing cross-sectional (TMS n = 734; TFC n = 734; SDMT n = 694) and longitudinal (TMS n = 270; TFC n = 270; SDMT n = 247) comparison with individual clinical symptom rating scores, to assess decline relative to affected peers. An electronic dashboard with a dynamic output display was created that rapidly compares clinical symptom rating scores of a specific individual against affected peers from a global cohort of comparable CAGn. This study shows the potential for use of multi-centre trial data in allowing comparison of the individual to a larger group to facilitate improved decision-making for individual patients. Visualisation of these metrics via a clinical dashboard demonstrates how it may aid identification of those with disproportionate decline, offering potential for intervention at specific critical points in the disease course.

A Household Is Not a Person: Consistency of Pro-Environmental Behavior in Adult Couples and the Accuracy of Proxy-Reports

PubMed Central

Seebauer, Sebastian; Fleiß, Jürgen; Schweighart, Markus

2016-01-01

Studies on environmental behavior commonly assume single respondents to represent their entire household or employ proxy-reporting, where participants answer for other household members. It is contested whether these practices yield valid results. Therefore, we interviewed 84 couples, wherein both household members provided self- and proxy-reports for their partner. For use of electrical household appliances, consumption of hot water, space heating, everyday mobility, and environmental values, many variables fail to achieve criteria for validity. Consistency (agreement between self-reports of household members) is higher if behaviors are undertaken jointly or negotiated between partners. Accuracy (agreement of proxy-reports with corresponding self-reports) is higher for routine behaviors and for behaviors easily observable by the partner. Overall, indices perform better than items on single behaviors. We caution against employing individual responses in place of the entire household. Interventions for energy conservation should approach the specific person undertaking the target behavior. PMID:28670000

Characterization of Disease-Related Covariance Topographies with SSMPCA Toolbox: Effects of Spatial Normalization and PET Scanners

PubMed Central

Peng, Shichun; Ma, Yilong; Spetsieris, Phoebe G; Mattis, Paul; Feigin, Andrew; Dhawan, Vijay; Eidelberg, David

2013-01-01

In order to generate imaging biomarkers from disease-specific brain networks, we have implemented a general toolbox to rapidly perform scaled subprofile modeling (SSM) based on principal component analysis (PCA) on brain images of patients and normals. This SSMPCA toolbox can define spatial covariance patterns whose expression in individual subjects can discriminate patients from controls or predict behavioral measures. The technique may depend on differences in spatial normalization algorithms and brain imaging systems. We have evaluated the reproducibility of characteristic metabolic patterns generated by SSMPCA in patients with Parkinson's disease (PD). We used [18F]fluorodeoxyglucose PET scans from PD patients and normal controls. Motor-related (PDRP) and cognition-related (PDCP) metabolic patterns were derived from images spatially normalized using four versions of SPM software (spm99, spm2, spm5 and spm8). Differences between these patterns and subject scores were compared across multiple independent groups of patients and control subjects. These patterns and subject scores were highly reproducible with different normalization programs in terms of disease discrimination and cognitive correlation. Subject scores were also comparable in PD patients imaged across multiple PET scanners. Our findings confirm a very high degree of consistency among brain networks and their clinical correlates in PD using images normalized in four different SPM platforms. SSMPCA toolbox can be used reliably for generating disease-specific imaging biomarkers despite the continued evolution of image preprocessing software in the neuroimaging community. Network expressions can be quantified in individual patients independent of different physical characteristics of PET cameras. PMID:23671030

Characterization of disease-related covariance topographies with SSMPCA toolbox: effects of spatial normalization and PET scanners.

PubMed

Peng, Shichun; Ma, Yilong; Spetsieris, Phoebe G; Mattis, Paul; Feigin, Andrew; Dhawan, Vijay; Eidelberg, David

2014-05-01

To generate imaging biomarkers from disease-specific brain networks, we have implemented a general toolbox to rapidly perform scaled subprofile modeling (SSM) based on principal component analysis (PCA) on brain images of patients and normals. This SSMPCA toolbox can define spatial covariance patterns whose expression in individual subjects can discriminate patients from controls or predict behavioral measures. The technique may depend on differences in spatial normalization algorithms and brain imaging systems. We have evaluated the reproducibility of characteristic metabolic patterns generated by SSMPCA in patients with Parkinson's disease (PD). We used [(18) F]fluorodeoxyglucose PET scans from patients with PD and normal controls. Motor-related (PDRP) and cognition-related (PDCP) metabolic patterns were derived from images spatially normalized using four versions of SPM software (spm99, spm2, spm5, and spm8). Differences between these patterns and subject scores were compared across multiple independent groups of patients and control subjects. These patterns and subject scores were highly reproducible with different normalization programs in terms of disease discrimination and cognitive correlation. Subject scores were also comparable in patients with PD imaged across multiple PET scanners. Our findings confirm a very high degree of consistency among brain networks and their clinical correlates in PD using images normalized in four different SPM platforms. SSMPCA toolbox can be used reliably for generating disease-specific imaging biomarkers despite the continued evolution of image preprocessing software in the neuroimaging community. Network expressions can be quantified in individual patients independent of different physical characteristics of PET cameras. Copyright © 2013 Wiley Periodicals, Inc.

Proxy-SU(3) symmetry in heavy deformed nuclei

NASA Astrophysics Data System (ADS)

Bonatsos, Dennis; Assimakis, I. E.; Minkov, N.; Martinou, Andriana; Cakirli, R. B.; Casten, R. F.; Blaum, K.

2017-06-01

Background: Microscopic calculations of heavy nuclei face considerable difficulties due to the sizes of the matrices that need to be solved. Various approximation schemes have been invoked, for example by truncating the spaces, imposing seniority limits, or appealing to various symmetry schemes such as pseudo-SU(3). This paper proposes a new symmetry scheme also based on SU(3). This proxy-SU(3) can be applied to well-deformed nuclei, is simple to use, and can yield analytic predictions. Purpose: To present the new scheme and its microscopic motivation, and to test it using a Nilsson model calculation with the original shell model orbits and with the new proxy set. Method: We invoke an approximate, analytic, treatment of the Nilsson model, that allows the above vetting and yet is also transparent in understanding the approximations involved in the new proxy-SU(3). Results: It is found that the new scheme yields a Nilsson diagram for well-deformed nuclei that is very close to the original Nilsson diagram. The specific levels of approximation in the new scheme are also shown, for each major shell. Conclusions: The new proxy-SU(3) scheme is a good approximation to the full set of orbits in a major shell. Being able to replace a complex shell model calculation with a symmetry-based description now opens up the possibility to predict many properties of nuclei analytically and often in a parameter-free way. The new scheme works best for heavier nuclei, precisely where full microscopic calculations are most challenged. Some cases in which the new scheme can be used, often analytically, to make specific predictions, are shown in a subsequent paper.

Intrareef variations in Li/Mg and Sr/Ca sea surface temperature proxies in the Caribbean reef-building coral Siderastrea siderea

NASA Astrophysics Data System (ADS)

Fowell, Sara E.; Sandford, Kate; Stewart, Joseph A.; Castillo, Karl D.; Ries, Justin B.; Foster, Gavin L.

2016-10-01

Caribbean sea surface temperatures (SSTs) have increased at a rate of 0.2°C per decade since 1971, a rate double that of the mean global change. Recent investigations of the coral Siderastrea siderea on the Belize Mesoamerican Barrier Reef System (MBRS) have demonstrated that warming over the last 30 years has had a detrimental impact on calcification. Instrumental temperature records in this region are sparse, making it necessary to reconstruct longer SST records indirectly through geochemical temperature proxies. Here we investigate the skeletal Sr/Ca and Li/Mg ratios of S. siderea from two distinct reef zones (forereef and backreef) of the MBRS. Our field calibrations of S. siderea show that Li/Mg and Sr/Ca ratios are well correlated with temperature, although both ratios are 3 times more sensitive to temperature change in the forereef than in the backreef. These differences suggest that a secondary parameter also influences these SST proxies, highlighting the importance for site- and species-specific SST calibrations. Application of these paleothermometers to downcore samples reveals highly uncertain reconstructed temperatures in backreef coral, but well-matched reconstructed temperatures in forereef coral, both between Sr/Ca-SSTs and Li/Mg-SSTs, and in comparison to the Hadley Centre Sea Ice and Sea Surface Temperature record. Reconstructions generated from a combined Sr/Ca and Li/Mg multiproxy calibration improve the precision of these SST reconstructions. This result confirms that there are circumstances in which both Li/Mg and Sr/Ca are reliable as stand-alone and combined proxies of sea surface temperature. However, the results also highlight that high-precision, site-specific calibrations remain critical for reconstructing accurate SSTs from coral-based elemental proxies.

Principal component analysis of socioeconomic factors and their association with malaria and arbovirus risk in Tanzania: a sensitivity analysis.

PubMed

Homenauth, Esha; Kajeguka, Debora; Kulkarni, Manisha A

2017-11-01

Principal component analysis (PCA) is frequently adopted for creating socioeconomic proxies in order to investigate the independent effects of wealth on disease status. The guidelines and methods for the creation of these proxies are well described and validated. The Demographic and Health Survey, World Health Survey and the Living Standards Measurement Survey are examples of large data sets that use PCA to create wealth indices particularly in low and middle-income countries (LMIC), where quantifying wealth-disease associations is problematic due to the unavailability of reliable income and expenditure data. However, the application of this method to smaller survey data sets, especially in rural LMIC settings, is less rigorously studied.In this paper, we aimed to highlight some of these issues by investigating the association of derived wealth indices using PCA on risk of vector-borne disease infection in Tanzania focusing on malaria and key arboviruses (ie, dengue and chikungunya). We demonstrated that indices consisting of subsets of socioeconomic indicators provided the least methodologically flawed representations of household wealth compared with an index that combined all socioeconomic variables. These results suggest that the choice of the socioeconomic indicators included in a wealth proxy can influence the relative position of households in the overall wealth hierarchy, and subsequently the strength of disease associations. This can, therefore, influence future resource planning activities and should be considered among investigators who use a PCA-derived wealth index based on community-level survey data to influence programme or policy decisions in rural LMIC settings. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Contrast-enhanced MRI compared with the physical examination in the evaluation of disease activity in juvenile idiopathic arthritis.

PubMed

Hemke, Robert; Maas, Mario; van Veenendaal, Mira; Dolman, Koert M; van Rossum, Marion A J; van den Berg, J Merlijn; Kuijpers, Taco W

2014-02-01

To assess the value of magnetic resonance imaging (MRI) in discriminating between active and inactive juvenile idiopathic arthritis (JIA) patients and to compare physical examination outcomes with MRI outcomes in the assessment of disease status in JIA patients. Consecutive JIA patients with knee involvement were prospectively studied using an open-bore MRI. Imaging findings from 146 JIA patients were analysed (59.6% female; mean age, 12.9 years). Patients were classified as clinically active or inactive. MRI features were evaluated using the JAMRIS system, comprising validated scores for synovial hypertrophy, bone marrow oedema, cartilage lesions and bone erosions. Inter-reader reliability was good for all MRI features (intra-class correlation coefficient [ICC] = 0.87-0.94). No differences were found between the two groups regarding MRI scores of bone marrow oedema, cartilage lesions or bone erosions. Synovial hypertrophy scores differed significantly between groups (P = 0.016). Nonetheless, synovial hypertrophy was also present in 14 JIA patients (35.9%) with clinically inactive disease. Of JIA patients considered clinically active, 48.6% showed no signs of MRI-based synovitis. MRI can discriminate between clinically active and inactive JIA patients. However, physical examination is neither very sensitive nor specific in evaluating JIA disease activity compared with MRI. Subclinical synovitis was present in >35% of presumed clinically inactive patients. • MRI is sensitive for evaluating juvenile idiopathic arthritis (JIA) disease activity. • Contrast-enhanced MRI can distinguish clinically active and inactive JIA patients. • Subclinical synovitis is present in 35.9 % of presumed clinically inactive patients. • Physical examination is neither sensitive nor specific in evaluating JIA disease activity.

A robust method using propensity score stratification for correcting verification bias for binary tests

PubMed Central

He, Hua; McDermott, Michael P.

2012-01-01

Sensitivity and specificity are common measures of the accuracy of a diagnostic test. The usual estimators of these quantities are unbiased if data on the diagnostic test result and the true disease status are obtained from all subjects in an appropriately selected sample. In some studies, verification of the true disease status is performed only for a subset of subjects, possibly depending on the result of the diagnostic test and other characteristics of the subjects. Estimators of sensitivity and specificity based on this subset of subjects are typically biased; this is known as verification bias. Methods have been proposed to correct verification bias under the assumption that the missing data on disease status are missing at random (MAR), that is, the probability of missingness depends on the true (missing) disease status only through the test result and observed covariate information. When some of the covariates are continuous, or the number of covariates is relatively large, the existing methods require parametric models for the probability of disease or the probability of verification (given the test result and covariates), and hence are subject to model misspecification. We propose a new method for correcting verification bias based on the propensity score, defined as the predicted probability of verification given the test result and observed covariates. This is estimated separately for those with positive and negative test results. The new method classifies the verified sample into several subsamples that have homogeneous propensity scores and allows correction for verification bias. Simulation studies demonstrate that the new estimators are more robust to model misspecification than existing methods, but still perform well when the models for the probability of disease and probability of verification are correctly specified. PMID:21856650

Optimal Cutoff Values of WHO-HPQ Presenteeism Scores by ROC Analysis for Preventing Mental Sickness Absence in Japanese Prospective Cohort

PubMed Central

Suzuki, Tomoko; Miyaki, Koichi; Sasaki, Yasuharu; Song, Yixuan; Tsutsumi, Akizumi; Kawakami, Norito; Shimazu, Akihito; Takahashi, Masaya; Inoue, Akiomi; Kurioka, Sumiko; Shimbo, Takuro

2014-01-01

Objectives Sickness absence due to mental disease in the workplace has become a global public health problem. Previous studies report that sickness presenteeism is associated with sickness absence. We aimed to determine optimal cutoff scores for presenteeism in the screening of the future absences due to mental disease. Methods A prospective study of 2195 Japanese employees from all areas of Japan was conducted. Presenteeism and depression were measured by the validated Japanese version of the World Health Organization Health and Work Performance Questionnaire (WHO-HPQ) and K6 scale, respectively. Absence due to mental disease across a 2-year follow-up was surveyed using medical certificates obtained for work absence. Socioeconomic status was measured via a self-administered questionnaire. Receiver operating curve (ROC) analysis was used to determine optimal cutoff scores for absolute and relative presenteeism in relation to the area under the curve (AUC), sensitivity, and specificity. Results The AUC values for absolute and relative presenteeism were 0.708 (95% CI, 0.618–0.797) and 0.646 (95% CI, 0.546–0.746), respectively. Optimal cutoff scores of absolute and relative presenteeism were 40 and 0.8, respectively. With multivariate adjustment, cohort participants with our proposal cutoff scores for absolute and relative presenteeism were significantly more likely to be absent due to mental disease (OR = 4.85, 95% CI: 2.20–10.73 and OR = 5.37, 95% CI: 2.42–11.93, respectively). The inclusion or exclusion of depressive symptoms (K6≥13) at baseline in the multivariate adjustment did not influence the results. Conclusions Our proposed optimal cutoff scores of absolute and relative presenteeism are 40 and 0.8, respectively. Participants who scored worse than the cutoff scores for presenteeism were significantly more likely to be absent in future because of mental disease. Our findings suggest that the utility of presenteeism in the screening of sickness absence due to mental disease would help prevent such an absence. PMID:25340520

Literacy and cancer anxiety as predictors of health status: an exploratory study.

PubMed

Hoffman-Goetz, L; Meissner, H I; Thomson, M D

2009-01-01

Socioeconomic status is a strong correlate of health status. Low literacy is associated with barriers to health information and anxiety about disease. Using 2003 Health Information National Trends Survey data, the relationship between self-reported health status and proxy measures of literacy (Hispanic ethnicity, education, and media variables), cancer anxiety, and cancer information seeking were assessed. Low literacy, measured by proxy variables, was associated with a greater likelihood of reporting fair-poor health status. Reporting excellent-good health status was less likely for people reporting frustration finding cancer information (odds ratio [OR] 0.68, 95% confidence interval [CI] 0.52-0.89), worry about cancer (OR 0.56, 95% CI 0.35-0.89), and increased chance of getting cancer (OR 3.5, 95% CI 0.24-0.51). Proxy variables for literacy suggest a possible contribution to health status disparities.

Where Am I? Location Archetype Keyword Extraction from Urban Mobility Patterns

PubMed Central

Kostakos, Vassilis; Juntunen, Tomi; Goncalves, Jorge; Hosio, Simo; Ojala, Timo

2013-01-01

Can online behaviour be used as a proxy for studying urban mobility? The increasing availability of digital mobility traces has provided new insights into collective human behaviour. Mobility datasets have been shown to be an accurate proxy for daily behaviour and social patterns, and behavioural data from Twitter has been used to predict real world phenomena such as cinema ticket sale volumes, stock prices, and disease outbreaks. In this paper we correlate city-scale urban traffic patterns with online search trends to uncover keywords describing the pedestrian traffic location. By analysing a 3-year mobility dataset we show that our approach, called Location Archetype Keyword Extraction (LAKE), is capable of uncovering semantically relevant keywords for describing a location. Our findings demonstrate an overarching relationship between online and offline collective behaviour, and allow for advancing analysis of community-level behaviour by using online search keywords as a practical behaviour proxy. PMID:23704964

Where am I? Location archetype keyword extraction from urban mobility patterns.

PubMed

Kostakos, Vassilis; Juntunen, Tomi; Goncalves, Jorge; Hosio, Simo; Ojala, Timo

2013-01-01

Can online behaviour be used as a proxy for studying urban mobility? The increasing availability of digital mobility traces has provided new insights into collective human behaviour. Mobility datasets have been shown to be an accurate proxy for daily behaviour and social patterns, and behavioural data from Twitter has been used to predict real world phenomena such as cinema ticket sale volumes, stock prices, and disease outbreaks. In this paper we correlate city-scale urban traffic patterns with online search trends to uncover keywords describing the pedestrian traffic location. By analysing a 3-year mobility dataset we show that our approach, called Location Archetype Keyword Extraction (LAKE), is capable of uncovering semantically relevant keywords for describing a location. Our findings demonstrate an overarching relationship between online and offline collective behaviour, and allow for advancing analysis of community-level behaviour by using online search keywords as a practical behaviour proxy.

Agreement in functional assessment: graphic approaches to displaying respondent effects.

PubMed

Haley, Stephen M; Ni, Pengsheng; Coster, Wendy J; Black-Schaffer, Randie; Siebens, Hilary; Tao, Wei

2006-09-01

The objective of this study was to examine the agreement between respondents of summary scores from items representing three functional content areas (physical and mobility, personal care and instrumental, applied cognition) within the Activity Measure for Postacute Care (AM-PAC). We compare proxy vs. patient report in both hospital and community settings as represented by intraclass correlation coefficients and two graphic approaches. The authors conducted a prospective, cohort study of a convenience sample of adults (n = 47) receiving rehabilitation services either in hospital (n = 31) or community (n = 16) settings. In addition to using intraclass correlation coefficients (ICC) as indices of agreement, we applied two graphic approaches to serve as complements to help interpret the direction and magnitude of respondent disagreements. We created a "mountain plot" based on a cumulative distribution curve and a "survival-agreement plot" with step functions used in the analysis of survival data. ICCs on summary scores between patient and proxy report were physical and mobility ICC = 0.92, personal care and instrumental ICC = 0.93, and applied cognition ICC = 0.77. Although combined respondent agreement was acceptable, graphic approaches helped interpret differences in separate analyses of clinician and family agreement. Graphic analyses allow for a simple interpretation of agreement data and may be useful in determining the meaningfulness of the amount and direction of interrespondent variation.

Assessment of CF lung disease using motion corrected PROPELLER MRI: a comparison with CT.

PubMed

Ciet, Pierluigi; Serra, Goffredo; Bertolo, Silvia; Spronk, Sandra; Ros, Mirco; Fraioli, Francesco; Quattrucci, Serena; Assael, M Baroukh; Catalano, Carlo; Pomerri, Fabio; Tiddens, Harm A W M; Morana, Giovanni

2016-03-01

To date, PROPELLER MRI, a breathing-motion-insensitive technique, has not been assessed for cystic fibrosis (CF) lung disease. We compared this technique to CT for assessing CF lung disease in children and adults. Thirty-eight stable CF patients (median 21 years, range 6-51 years, 22 female) underwent MRI and CT on the same day. Study protocol included respiratory-triggered PROPELLER MRI and volumetric CT end-inspiratory and -expiratory acquisitions. Two observers scored the images using the CF-MRI and CF-CT systems. Scores were compared with intra-class correlation coefficient (ICC) and Bland-Altman plots. The sensitivity and specificity of MRI versus CT were calculated. MRI sensitivity for detecting severe CF bronchiectasis was 0.33 (CI 0.09-0.57), while specificity was 100% (CI 0.88-1). ICCs for bronchiectasis and trapped air were as follows: MRI-bronchiectasis (0.79); CT-bronchiectasis (0.85); MRI-trapped air (0.51); CT-trapped air (0.87). Bland-Altman plots showed an MRI tendency to overestimate the severity of bronchiectasis in mild CF disease and underestimate bronchiectasis in severe disease. Motion correction in PROPELLER MRI does not improve assessment of CF lung disease compared to CT. However, the good inter- and intra-observer agreement and the high specificity suggest that MRI might play a role in the short-term follow-up of CF lung disease (i.e. pulmonary exacerbations). PROPELLER MRI does not match CT sensitivity to assess CF lung disease. PROPELLER MRI has lower sensitivity than CT to detect severe bronchiectasis. PROPELLER MRI has good to very good intra- and inter-observer variability. PROPELLER MRI can be used for short-term follow-up studies in CF.

Modulation of the oxidative plasmatic state in gastroesophageal reflux disease with the addition of rich water molecular hydrogen: A new biological vision.

PubMed

Franceschelli, Sara; Gatta, Daniela Maria Pia; Pesce, Mirko; Ferrone, Alessio; Di Martino, Giuseppe; Di Nicola, Marta; De Lutiis, Maria Anna; Vitacolonna, Ester; Patruno, Antonia; Grilli, Alfredo; Felaco, Mario; Speranza, Lorenza

2018-05-01

Gastroesophageal reflux disease (GERD), a clinical condition characterized by reflux of gastroduodenal contents in the oesophagus, has proved to demonstrate a strong link between oxidative stress and the development of GERD. Proton pump inhibitors (PPIs) have been universally accepted as first-line therapy for management of GERD. The potential benefits of electrolysed reduced water (ERW), rich in molecular hydrogen, in improving symptoms and systemic oxidative stress associated with GERD was assessed. The study was performed on 84 GERD patients undergoing control treatment (PPI + tap water) or experimental treatment (PPI + ERW) for 3 months. These patients were subjected to the GERD-Health Related Quality of Life Questionnaire as well as derivatives reactive oxigen metabolites (d-ROMs) test, biological antioxidant potential (BAP) test, superoxide anion, nitric oxide and malondialdehyde assays, which were all performed as a proxy for the oxidative/nitrosative stress and the antioxidant potential status. Spearman's correlation coefficient was used to evaluate the correlation between scores and laboratory parameters. Overall results demonstrated that an optimal oxidative balance can be restored and GERD symptoms can be reduced rapidly via the integration of ERW in GERD patients. The relative variation of heartburn and regurgitation score was significantly correlated with laboratory parameters. Thus, in the selected patients, combination treatment with PPI and ERW improves the cellular redox state leading to the improvement of the quality of life as demonstrated by the correlation analysis between laboratory parameters and GERD symptoms. © 2018 The Authors. Journal of Cellular and Molecular Medicine published by John Wiley & Sons Ltd and Foundation for Cellular and Molecular Medicine.

A review of scoring systems for ocular involvement in chronic cutaneous bullous diseases.

PubMed

Lee, Brendon W H; Tan, Jeremy C K; Radjenovic, Melissa; Coroneo, Minas T; Murrell, Dedee F

2018-05-22

Epidermolysis bullosa (EB) and autoimmune blistering diseases (AIBD) describe a group of rare chronic dermatoses characterized by cutaneous fragility and blistering. Although uncommon, significant ocular surface disease (OSD) may occur in both and require ophthalmological assessment. Disease scoring systems have a critical role in providing objective and accurate assessment of disease severity. The objectives of this report were, firstly, to document the prevalence and severity of ocular involvement in EB/AIBD. Secondly, to review and evaluate existing ocular and systemic scoring systems for EB/AIBD. Finally, to identify areas where further development of ocular specific tools in EB/AIBD could be pursued. A literature search was performed in October 2017 utilising Medline, Embase, and Scopus databases. The results were restricted by date of publication, between 01.01.1950 and 31.10.2017. The reference lists of these articles were then reviewed for additional relevant publications. Articles of all languages were included if an English translation was available. Articles were excluded if they were duplicates, had no reference to ocular involvement in EB/AIBD or described ocular involvement in other diseases. Descriptions of ocular involvement in EB/AIBD were identified in 88 peer-reviewed journal articles. Findings reported include but are not limited to: cicatrising conjunctivitis, meibomian gland dysfunction, dry eye disease, trichiasis, symblepharon, fornix fibrosis, keratopathy, ectropion/entropion, ankyloblepharon, corneal ulceration, visual impairment and blindness. Although scoring systems exist for assessment of OSD in mucous membrane pemphigoid, no such tools exist for the other AIBD subtypes or for EB. Several systemic scoring systems exist in the dermatological literature that are efficacious in grading overall EB/AIBD severity, but have limited inclusion of ocular features. To the best of our knowledge, there is no recognised or validated scoring systems which comprehensively stages or grades the spectrum of ocular manifestations in EB/AIBD. There are a range of ocular complications documented in EB and AIBD. Development of a comprehensive ocular scoring system for EB/AIBD which incorporates the delineation between 'activity' and 'damage' would facilitate more objective patient assessment, improved longitudinal monitoring, comparison of intervention outcomes, and provide commonality for discussion of these patients due to the multidisciplinary nature of their care.

Ultrashort Echo-Time Magnetic Resonance Imaging Is a Sensitive Method for the Evaluation of Early Cystic Fibrosis Lung Disease

PubMed Central

Roach, David J.; Crémillieux, Yannick; Fleck, Robert J.; Brody, Alan S.; Serai, Suraj D.; Szczesniak, Rhonda D.; Kerlakian, Stephanie; Clancy, John P.

2016-01-01

Rationale: Recent advancements that have been made in magnetic resonance imaging (MRI) improve our ability to assess pulmonary structure and function in patients with cystic fibrosis (CF). A nonionizing imaging modality that can be used as a serial monitoring tool throughout life can positively affect patient care and outcomes. Objectives: To compare an ultrashort echo-time MRI method with computed tomography (CT) as a biomarker of lung structure abnormalities in young children with early CF lung disease. Methods: Eleven patients with CF (mean age, 31.8 ± 5.7 mo; median age, 33 mo; 7 male and 4 female) were imaged via CT and ultrashort echo-time MRI. Eleven healthy age-matched patients (mean age, 22.5 ± 10.2 mo; median age, 23 mo; 5 male and 6 female) were imaged via ultrashort echo-time MRI. CT scans of 13 additional patients obtained for clinical indications not affecting the heart or lungs and interpreted as normal provided a CT control group (mean age, 24.1 ± 11.7 mo; median age, 24 mo; 6 male and 7 female). Studies were scored by two experienced radiologists using a well-validated CF-specific scoring system for CF lung disease. Measurements and Main Results: Correlations between CT and ultrashort echo-time MRI scores of patients with CF were very strong, with P values ≤0.001 for bronchiectasis (r = 0.96) and overall score (r = 0.90), and moderately strong for bronchial wall thickening (r = 0.62, P = 0.043). MRI easily differentiated CF and control groups via a reader CF-specific scoring system. Conclusions: Ultrashort echo-time MRI detected structural lung disease in very young patients with CF and provided imaging data that correlated well with CT. By quantifying early CF lung disease without using ionizing radiation, ultrashort echo-time MRI appears well suited for pediatric patients requiring longitudinal imaging for clinical care or research studies. Clinical Trial registered with www.clinicaltrials.gov (NCT01832519). PMID:27551814

Education-Adjusted Normality Thresholds for FDG-PET in the Diagnosis of Alzheimer Disease.

PubMed

Mainta, Ismini C; Trombella, Sara; Morbelli, Silvia; Frisoni, Giovanni B; Garibotto, Valentina

2018-06-05

A corollary of the reserve hypothesis is that what is regarded as pathological cortical metabolism in patients might vary according to education. The aim of this study is to assess the incremental diagnostic value of education-adjusted over unadjusted thresholds on the diagnostic accuracy of FDG-PET as a biomarker for Alzheimer disease (AD). We compared cortical metabolism in 90 healthy controls and 181 AD patients from the Alzheimer Disease Neuroimaging Initiative (ADNI) database. The AUC of the ROC curve did not differ significantly between the whole group and the higher-education patients or the lower-education subjects. The threshold of wMetaROI values providing 80% sensitivity was lower in higher-education patients and higher in the lower-education patients, compared to the standard threshold derived over the whole AD collective, without, however, significant changes in sensitivity and specificity. These data show that education, as a proxy of reserve, is not a major confounder in the diagnostic accuracy of FDG-PET in AD and the adoption of education-adjusted thresholds is not required in daily practice. © 2018 S. Karger AG, Basel.

HRQOL using SF36 (generic specific) in liver cirrhosis.

PubMed

Janani, K; Varghese, Joy; Jain, Mayank; Harika, Kavya; Srinivasan, Vijaya; Michael, Tom; Jayanthi, Venkataraman

2017-07-01

Health-related quality of life (HRQOL) is influenced by the disease state, associated complications and their management. In patients with liver cirrhosis co-morbidity, severity of liver disease and their complications are likely to affect the QOL. The aim of the study was to determine the factors that are likely to influence the domains of HRQOL using SF-36 in patients with liver cirrhosis. For the study, 149 patients with liver cirrhosis were compared with age-gender matched healthy controls for physical and mental components of SF-36 score and the effects of age, co-morbidity severity of liver disease and complications of liver cirrhosis on HRQOL were assessed using the same questionnaire. Results of the study showed that except for body pain, all the patients had a significantly low individual and composite domain score (p-value <0.0001) compared to age-gender matched controls. Patients below 45 years, Child-Turcotte-Pugh (CTP) C, a high model for end-stage liver disease (MELD) and higher rates of complication had low scores for body pain (KW p <0.005) and those above 55 years, for physical function (p <0.05). Both the physical components had a major impact on mental composite score (MCS) (KW p <0.05). Co-morbidity that included diabetes, hypertension and hypothyroid states in various combinations had no effect on SF-36 scores while co-morbid conditions like musculoskeletal pain, arthralgia etc. affected physical domains (physical function, body pain and role physical) and physical component score (PCS) (KW p <0.01 to <0.0001). By linear regression, MELD had a direct and significant association with overall PCS and mental component score (MCS).

Associations between Subjective Happiness and Dry Eye Disease: A New Perspective from the Osaka Study

PubMed Central

Kawashima, Motoko; Uchino, Miki; Yokoi, Norihiko; Uchino, Yuichi; Dogru, Murat; Komuro, Aoi; Sonomura, Yukiko; Kato, Hiroaki; Kinoshita, Shigeru; Mimura, Masaru; Tsubota, Kazuo

2015-01-01

Importance Dry eye disease has become an important health problem. A lack of concordance between self-reported symptoms and the outcome of dry eye examinations has raised questions about dry eye disease. Objective To explore the association between subjective happiness and objective and subjective symptoms of dry eye disease. Design The study adopted a cross-sectional design. Setting All the employees of a company in Osaka, Japan. Participants 672 Japanese office workers using Visual Display Terminals (age range: 26–64 years). Methods The dry eye measurement tools included the Schirmer test, conjunctivocorneal staining, the tear film break-up time, as well as the administration of a dry eye symptoms questionnaire. Happiness was measured by the Subjective Happiness Scale. Main Outcome Measures Dry eye examination parameters, dry eye symptoms questionnaires, and the Subjective Happiness Scale score. Results Of the 672 workers, 561 (83.5%) completed the questionnaires and examinations. The mean Subjective Happiness Scale score was 4.91 (SD = 1.01). This score was inversely correlated with the dry eye symptom score (r = -0.188, p < 0.001), but was not associated with objective findings which include conjunctivocorneal staining, low Schirmer test score, or low tear film break-up time. The level of subjective happiness was the lowest in the group without objective results, but reported subjective symptoms of dry eyes (p < 0.05). Conclusions and Relevance There is evidence of the relationship between subjective happiness and self-reported symptoms of dry eyes. Findings of this study revealed a new perspective on dry eye disease, including the potential for innovative treatments of a specific population with dry eye disease. PMID:25830665

The impact of health changes on labor supply: evidence from merged data on individual objective medical diagnosis codes and early retirement behavior.

PubMed

Christensen, Bent Jesper; Kallestrup-Lamb, Malene

2012-06-01

The justification bias in the estimated impact of health shocks on retirement is mitigated by using objective health measures from a large, register-based longitudinal data set including medical diagnosis codes, along with labor market status, financial, and socio-economic variables. The duration until retirement is modeled using single and competing risk specifications, observed and unobserved heterogeneity, and flexible baseline hazards. Wealth is used as a proxy for elapsed duration to mitigate the potential selection bias stemming from conditioning on initial participation. The competing risk specification distinguishes complete multiperiod routes to retirement, such as unemployment followed by early retirement. A result on comparison of coefficients across all states is offered. The empirical results indicate a strong impact of health changes on retirement and hence a large potential for public policy measures intended to retain older workers longer in the labor force. Disability responds more to health shocks than early retirement, especially to diseases of the circulatory, respiratory, and musculoskeletal systems, as well as mental and behavioral disorders. Some unemployment spells followed by early retirement appear voluntary and spurred by life style diseases. Copyright © 2012 John Wiley & Sons, Ltd.

Finger displacement in Parkinson disease: up? down? sideways?

PubMed

Lieberman, Abraham; Dhall, Rohit; Salins, Naomi; Sadreddin, Arshia; Moguel-Cobos, Guillermo; Karis, John; Krishnamurthi, Narayanan

2014-05-01

We previously reported that patients with tremor preponderant Parkinson disease (PD) displayed upward or lateral displacement of their more tremulous finger when they pointed both their index fingers at a target and closed their eyes for 15 seconds. In this study, we examined the phenomenon in 104 PD patients: 72 patients without tremor and 32 with minimal tremor to see if the displacement is related to the disease or the tremor. Sixty-eight of the 72 patients without tremor, 94%, exhibited finger displacement suggesting the phenomenon is related to the disease. None of the 104 patients were demented: mini-mental status examination (MMSE) score 29.0 ± 0. 75. Ninety patients displayed upward displacement (56 patients) or lateral or medial displacement (34 patients). MMSE score of the 90 patients: 29.2 ± 0.74 with no score < 28. Eight patients (6 without tremor) displayed downward displacement. MMSE score of the 8 patients: 27.5 ± 0.35 with 5 having MMSE score of 27. Although not significant the results suggest that patients with downward displacement and lower MMSE score may be evolving a dementia. Upward displacement with eyes closed for 15 seconds requires an ability to "remember" the position of the finger in space and to alter tone to overcome gravity. Downward displacement implies an inability to "remember" the position of the finger in space an inability to overcome the effects of gravity. This may be more likely in patients who are evolving a dementia. Two patients, with PD-like symptoms, and specific anatomical abnormalities are also presented as they illustrate the anatomy of finger displacement.

Quality of Life in Patients With Chronic Rhinosinusitis and Sleep Dysfunction Undergoing Endoscopic Sinus Surgery: A Pilot Investigation of Comorbid Obstructive Sleep Apnea.

PubMed

Alt, Jeremiah A; DeConde, Adam S; Mace, Jess C; Steele, Toby O; Orlandi, Richard R; Smith, Timothy L

2015-10-01

Patients with chronic rhinosinusitis (CRS) have reduced sleep quality linked to their overall well-being and disease-specific quality of life (QOL). Other primary sleep disorders also affect QOL. To determine the impact of comorbid obstructive sleep apnea (OSA) on CRS disease-specific QOL and sleep dysfunction in patients with CRS following functional endoscopic sinus surgery. Prospective multisite cohort study conducted between October 2011 and November 2014 at academic, tertiary referral centers with a population-based sample of 405 adults. Functional endoscopic sinus surgery for medically refractory symptoms of CRS. Primary outcome measures consisted of preoperative and postoperative scores operationalized by the Rhinosinusitis Disability Index (RSDI) survey, the 22-item Sinonasal Outcome Test (SNOT-22), and the Pittsburgh Sleep Quality Index (PSQI). Obstructive sleep apnea was the primary, independent risk factor. Of 405 participants, 60 (15%) had comorbid OSA. A total of 285 (70%) participants provided preoperative and postoperative survey responses, with a mean (SD) of 13.7 (5.3) months of follow-up. Significant postoperative improvement (P < .05) was reported across all mean disease-specific QOL measures for both participants with and without comorbid OSA. Participants without OSA reported significant greater improvement in unadjusted mean (SD) RSDI global scores (−25.0 [23.3] vs. −16.5 [22.1]; P = .03), RSDI physical (−10.7 [9.2] vs. −7.3 [9.1]; P = .03) and functional (−8.4 [8.7] vs. −5.1 [7.5]; P = .03) subdomain scores, and SNOT-22 rhinologic symptom domain scores (−9.1 [7.7] vs. −5.7 [6.9]; P = .008). Participants without OSA also reported greater improvements on mean (SD) PSQI global (−1.9 [4.0] vs. −0.5 [3.7]; P = .03), sleep quality (−0.4 [0.8] vs. −0.03 [0.7]; P = .02), and sleep disturbance (−0.4 [0.7] vs. −0.1 [0.7]; P = .03) scores. The majority of these associations were found to be durable after adjustment for alternate independent cofactors using stepwise linear regression modeling. Patients with CRS and comorbid OSA have poor QOL with substantial disease-specific QOL improvements following surgery. Patients who present with CRS should be assessed for primary sleep disorders and, if identified, should be treated concurrently for both CRS and OSA to improve sleep dysfunction to optimize surgical outcomes. clinicaltrials.gov Identifier: NCT01332136.

Impact of cough across different chronic respiratory diseases: comparison of two cough-specific health-related quality of life questionnaires.

PubMed

Polley, Liam; Yaman, Nurman; Heaney, Liam; Cardwell, Chris; Murtagh, Eimear; Ramsey, John; MacMahon, Joseph; Costello, Richard W; McGarvey, Lorcan

2008-08-01

Cough is a prominent symptom across a range of common chronic respiratory diseases and impacts considerably on patient health status. We undertook a cross-sectional comparison of scores from two cough-specific health-related quality of life (HRQoL) questionnaires, the Leicester Cough Questionnaire (LCQ), and the Cough Quality of Life Questionnaire (CQLQ), together with a generic HRQoL measure, the EuroQol. Questionnaires were administered to and spirometry performed on 147 outpatients with chronic cough (n = 83), COPD (n = 18), asthma (n = 20), and bronchiectasis (n = 26). There was no significant difference in the LCQ and CQLQ total scores between groups (p = 0.24 and p = 0.26, respectively). Exploratory analyses of questionnaire subdomains revealed differences in psychosocial issues and functional impairment between the four groups (p = 0.01 and p = 0.05, respectively). CQLQ scores indicated that chronic coughers have more psychosocial issues than patients with bronchiectasis (p = 0.03) but less functional impairment than COPD patients (p = 0.04). There was a significant difference in generic health status across the four disease groups (p = 0.04), with poorest health status in COPD patients. A significant inverse correlation was observed between CQLQ and LCQ in each disease group (chronic cough r = - 0.56, p < 0.001; COPD r = - 0.49, p = 0.04; asthma r = - 0.94, p < 0.001; and bronchiectasis r = - 0.88, p < 0.001). There was no correlation between cough questionnaire scores and FEV(1) in any group, although a significant correlation between EuroQol visual analog scale component and FEV(1) (r = 0.639, p = 0.004) was observed in COPD patients. Cough adversely affects health status across a range of common respiratory diseases. The LCQ and CQLQ can each provide important additional information concerning the impact of cough.

Development and initial validation of the Cardiovascular Disease Acceptance and Action Questionnaire (CVD-AAQ) in an Italian sample of cardiac patients

PubMed Central

Spatola, Chiara A. M.; Cappella, Emanuele A. M.; Goodwin, Christina L.; Baruffi, Matteo; Malfatto, Gabriella; Facchini, Mario; Castelnuovo, Gianluca; Manzoni, Gian Mauro; Molinari, Enrico

2014-01-01

Psychological inflexibility refers to the attempt to decrease internal distress even when doing so is inconsistent with life values, and has been identified as a potential barrier to making and maintaining health behavior changes that are consistent with a heart-healthy lifestyle. Disease- and behavior-specific measures of psychological inflexibility have been developed and utilized in treatment research. However, no specific measure has been created for patients with heart disease. Thus, the CardioVascular Disease Acceptance and Action Questionnaire (CVD-AAQ) was developed. The present study is aimed to evaluate the psychometric properties of the CVD-AAQ and to explore its association with measures of psychological adjustment and cardiovascular risk factors in an Italian sample of 275 cardiac patients. Exploratory factor analysis showed a structural one-factor solution with satisfactory internal consistency and test–retest reliability. The relation with other measures was in the expected direction with stronger correlations for the theoretically consistent variables, supporting convergent and divergent validity. CVD-AAQ scores were associated with general psychological inflexibility, anxiety and depression and inversely correlated with psychological well-being. Moreover, the results showed that CVD-AAQ scores are associated with two relevant risk factors for cardiac patients, namely low adherence to medication and being overweight. In sum, results suggest that the CVD-AAQ is a reliable and valid measure of heart disease-specific psychological inflexibility with interesting clinical applications for secondary prevention care. PMID:25452737

The clinical utility of health-related quality of life screening in a pediatric inflammatory bowel disease clinic.

PubMed

Ryan, Jamie L; Mellon, Michael W; Junger, Katherine W F; Hente, Elizabeth A; Denson, Lee A; Saeed, Shehzad A; Hommel, Kevin A

2013-11-01

Adjusting to symptom flares, treatment regimens, and side effects places youth with inflammatory bowel disease (IBD) at increased risk for emotional and behavioral problems and adverse disease outcomes. Implementation of psychosocial screening into clinical practice remains a challenge. This study examines the clinical utility of health-related quality of life (HRQOL) screening in predicting disease outcome and healthcare utilization. One hundred twelve youth of 7 to 18 years diagnosed with IBD and their parents. Youth completed standardized measures of HRQOL and depression. Parents completed a proxy report of HRQOL. Pediatric gastroenterologists provided the Physician Global Assessment. Families were recruited from a pediatric gastroenterology clinic. Retrospective chart reviews examined disease outcome and healthcare utilization for 12 months after baseline measurement. Linear regressions, controlling for demographic and disease parameters, revealed that baseline measurement of youth and parent proxy-reported HRQOL predicted the number of IBD-related hospital admissions, gastroenterology clinic visits, emergency department visits, psychology clinic visits, telephone contacts, and pain management referrals over the next 12 months. Disease outcome was not significant. Lower HRQOL was predictive of increased healthcare utilization among youth with IBD. Regular HRQOL screening may be the impetus to providing better case management and allocating resources based on ongoing care needs and costs. Proactive interventions focused on patients with poor HRQOL may be an efficient approach to saving on healthcare costs and resource utilization.

Characterization of clinical photosensitivity in cutaneous lupus erythematosus.

PubMed

Foering, Kristen; Chang, Aileen Y; Piette, Evan W; Cucchiara, Andrew; Okawa, Joyce; Werth, Victoria P

2013-08-01

Photosensitivity (PS) in lupus erythematosus (LE) is frequently determined by patient report. We sought to characterize self-reported PS in cutaneous LE (CLE). The PS survey was used to classify subject responses into 5 phenotypes: direct sun-induced CLE flare (directCLE); general exacerbation of CLE (genCLE); polymorphic light eruption-like reactions (genSkin); general pruritus/paresthesias (genRxn); and sun-induced systemic symptoms (genSys). In all, 91 subjects with CLE alone or with CLE and systemic LE were interviewed. In all, 81% ascribed to 1 or more PS phenotypes. CLE-specific reactions (direct sun-induced CLE flare or general exacerbation of CLE) were reported by 86% of photosensitive subjects. Higher CLE disease activity (measured by CLE Disease Area and Severity Index activity scores) was suggestive of direct sun-induced CLE flare reactions (P = .09). In all, 60% of photosensitive subjects described CLE-nonspecific reactions: polymorphic light eruption-like rash and general pruritus/paresthesias. These phenotypes often co-occurred with CLE-specific reactions and were predicted by more systemic disease activity as measured by Physicians Global Assessment (PGA) scores in regression analyses (genSkin, P = .02) and (genRxn, P = .05). In all, 36% of subjects reported systemic reactions and higher PGA scores were predictive of the sun-induced systemic symptoms phenotype (P = .02); a diagnosis of systemic LE was not (P = .14). PS was inferred from patient report and not directly observed. Characterization of self-reported PS in LE reveals that patients experience combinations of CLE-specific, CLE-nonspecific, and systemic reactions to sunlight. Sun-induced CLE flares are associated with more active CLE disease. Polymorphic light eruption-like, generalized pruritus/paresthesias, and systemic reactions are associated with more active systemic disease. Recognition of PS phenotypes will permit improved definitions of clinical PS and allow for more precise investigation into its pathophysiology. Copyright © 2013 American Academy of Dermatology, Inc. Published by Mosby, Inc. All rights reserved.

Mortality-specific comorbidity among inpatients with epilepsy: A preliminary cross-sectional study in West China.

PubMed

Si, Yang; Xiao, Xiaoqiang; Sun, Hongbin

2018-05-09

The purpose of this study was to investigate the current condition of mortality-specific comorbidity among hospitalized patients with epilepsy (PWE). The discharge abstract records of PWE from over 730,000 admissions were extracted from the hospital medical database. Fourteen mortality-related comorbidities from an epilepsy-specific index (ESI) were selected for the present assessment. The hospital-based prevalence of these comorbidities was estimated. The distributions of PWE with an ESI-based prognostic score were calculated. A cohort of 11,422 PWE (male 58.5%) was included in the present study. The order of comorbidities in terms of high to low prevalence ranking was as follows: hypertension (19.6%), peripheral vascular disease (8.1%), cardiac arrhythmias (5.8%), dementia (4.6%), renal disease (4.1%), congestive heart failure (3.8%), metastatic cancer (3.4%), brain tumor (2.4%), paraplegia and hemiplegia (2.0%), solid tumor without metastasis (1.7%), anoxic brain injury (1.4%), pulmonary circulation disorders (1.3%), moderate or severe liver disease (1.1%), and aspiration pneumonia (0.2%). High rates of comorbidities in the elderly were also noted. Spearman correlation analysis showed a moderate correlation between the changes in ages and prognostic score with a rho of 0.6 (p<0.001). The percentage of females with a score of 0 was higher than that of males (p<0.001), indicating that the prognostic survival of the majority of females was relatively longer than that of males. Our study demonstrated that the comorbidity burden of female PWE was relatively lower than that of male PWE. High prevalence of cardiac and vascular diseases was found in PWE, thereby affecting the long-term survival rate. Considering that the propensity of increased comorbidity was prevalent with age, we should implement early preventive measures to manage the potential comorbidities associated with mortality, reduce disease burden, and prolong the survival of PWE. Copyright © 2018. Published by Elsevier Inc.

The Metadata Coverage Index (MCI): A standardized metric for quantifying database metadata richness.

PubMed

Liolios, Konstantinos; Schriml, Lynn; Hirschman, Lynette; Pagani, Ioanna; Nosrat, Bahador; Sterk, Peter; White, Owen; Rocca-Serra, Philippe; Sansone, Susanna-Assunta; Taylor, Chris; Kyrpides, Nikos C; Field, Dawn

2012-07-30

Variability in the extent of the descriptions of data ('metadata') held in public repositories forces users to assess the quality of records individually, which rapidly becomes impractical. The scoring of records on the richness of their description provides a simple, objective proxy measure for quality that enables filtering that supports downstream analysis. Pivotally, such descriptions should spur on improvements. Here, we introduce such a measure - the 'Metadata Coverage Index' (MCI): the percentage of available fields actually filled in a record or description. MCI scores can be calculated across a database, for individual records or for their component parts (e.g., fields of interest). There are many potential uses for this simple metric: for example; to filter, rank or search for records; to assess the metadata availability of an ad hoc collection; to determine the frequency with which fields in a particular record type are filled, especially with respect to standards compliance; to assess the utility of specific tools and resources, and of data capture practice more generally; to prioritize records for further curation; to serve as performance metrics of funded projects; or to quantify the value added by curation. Here we demonstrate the utility of MCI scores using metadata from the Genomes Online Database (GOLD), including records compliant with the 'Minimum Information about a Genome Sequence' (MIGS) standard developed by the Genomic Standards Consortium. We discuss challenges and address the further application of MCI scores; to show improvements in annotation quality over time, to inform the work of standards bodies and repository providers on the usability and popularity of their products, and to assess and credit the work of curators. Such an index provides a step towards putting metadata capture practices and in the future, standards compliance, into a quantitative and objective framework.

STAKEHOLDERS’ OPINIONS AND EXPECTATIONS OF THE GLOBAL FUND AND THEIR POTENTIAL ECONOMIC IMPLICATIONS

PubMed Central

Galárraga, Omar; Bertozzi, Stefano M.

2009-01-01

Objective To analyze stakeholder opinions and expectations of the Global Fund to Fight AIDS, Tuberculosis, and Malaria, and to discuss their potential economic and financial implications. Design The Global Fund commissioned an independent study, the “360° Stakeholder Assessment,” to canvas feedback on the organization’s reputation and performance with an on-line survey of 909 respondents representing major stakeholders worldwide. We created a proxy for expectations based on categorical responses for specific Global Fund attributes’ importance to the stakeholders, and current perceived performance. Methods Using multivariate regression, we analyzed 23 unfulfilled expectations related to: resource mobilization; impact measurement; harmonization and inclusion; effectiveness of the Global Fund partner environment; and portfolio characteristics. The independent variables are personal- and regional-level characteristics that affect expectations. Results The largest unfulfilled expectations relate to: mobilization of private sector resources; efficiency in disbursing funds; and assurance that people affected by the three diseases are reached. Stakeholders involved with the Fund through the Country Coordinating Mechanisms, those working in multilateral organizations, and persons living with HIV are more likely to have unfulfilled expectations. In contrast, higher levels of involvement with the Fund correlate with fulfilled expectations. Stakeholders living in sub-Saharan Africa were less likely to have their expectations met. Conclusions Stakeholders unfulfilled expectations result largely from factors external to them, but also from factors over which they have influence. In particular, attributes related to partnership score poorly even though stakeholders have influence in that area. Joint efforts to address perceived performance gaps may improve future performance, and positively influence investment levels and economic viability. PMID:18664957

Stakeholders' opinions and expectations of the Global Fund and their potential economic implications.

PubMed

Galárraga, Omar; Bertozzi, Stefano M

2008-07-01

To analyse stakeholder opinions and expectations of the Global Fund to Fight AIDS, Tuberculosis, and Malaria, and to discuss their potential economic and financial implications. The Global Fund commissioned an independent study, the '360 degrees Stakeholder Survey', to canvas feedback on the organization's reputation and performance with an on-line survey of 909 respondents representing major stakeholders worldwide. We created a proxy for expectations based on categorical responses for specific Global Fund attributes' importance to the stakeholders and current perceived performance. Using multivariate regression, we analysed 23 unfulfilled expectations related to: resource mobilization; impact measurement; harmonization and inclusion; effectiveness of the Global Fund partner environment; and portfolio characteristics. The independent variables are personal and regional-level characteristics that affect expectations. The largest unfulfilled expectations relate to: mobilization of private sector resources; efficiency in disbursing funds; and assurance that people affected by the three diseases are reached. Stakeholders involved with the fund through the country coordinating mechanisms, those working in multilateral organizations and persons living with HIV are more likely to have unfulfilled expectations. In contrast, higher levels of involvement with the fund correlate with fulfilled expectations. Stakeholders living in sub-Saharan Africa were less likely to have their expectations met. Stakeholders' unfulfilled expectations result largely from factors external to them, but also from factors over which they have influence. In particular, attributes related to partnership score poorly even though stakeholders have influence in that area. Joint efforts to address perceived performance gaps may improve future performance and positively influence investment levels and economic viability.

Diagnostic performance of an acoustic-based system for coronary artery disease risk stratification.

PubMed

Winther, Simon; Nissen, Louise; Schmidt, Samuel Emil; Westra, Jelmer Sybren; Rasmussen, Laust Dupont; Knudsen, Lars Lyhne; Madsen, Lene Helleskov; Kirk Johansen, Jane; Larsen, Bjarke Skogstad; Struijk, Johannes Jan; Frost, Lars; Holm, Niels Ramsing; Christiansen, Evald Høj; Botker, Hans Erik; Bøttcher, Morten

2018-06-01

Diagnosing coronary artery disease (CAD) continues to require substantial healthcare resources. Acoustic analysis of transcutaneous heart sounds of cardiac movement and intracoronary turbulence due to obstructive coronary disease could potentially change this. The aim of this study was thus to test the diagnostic accuracy of a new portable acoustic device for detection of CAD. We included 1675 patients consecutively with low to intermediate likelihood of CAD who had been referred for cardiac CT angiography. If significant obstruction was suspected in any coronary segment, patients were referred to invasive angiography and fractional flow reserve (FFR) assessment. Heart sound analysis was performed in all patients. A predefined acoustic CAD-score algorithm was evaluated; subsequently, we developed and validated an updated CAD-score algorithm that included both acoustic features and clinical risk factors. Low risk is indicated by a CAD-score value ≤20. Haemodynamically significant CAD assessed from FFR was present in 145 (10.0%) patients. In the entire cohort, the predefined CAD-score had a sensitivity of 63% and a specificity of 44%. In total, 50% had an updated CAD-score value ≤20. At this cut-off, sensitivity was 81% (95% CI 73% to 87%), specificity 53% (95% CI 50% to 56%), positive predictive value 16% (95% CI 13% to 18%) and negative predictive value 96% (95% CI 95% to 98%) for diagnosing haemodynamically significant CAD. Sound-based detection of CAD enables risk stratification superior to clinical risk scores. With a negative predictive value of 96%, this new acoustic rule-out system could potentially supplement clinical assessment to guide decisions on the need for further diagnostic investigation. ClinicalTrials.gov identifier NCT02264717; Results. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

The postoperative Model for End stage Liver Disease score as a predictor of short-term outcome after transplantation of extended criteria donor livers.

PubMed

Benko, Tamas; Gallinat, Anja; Minor, Thomas; Saner, Fuat H; Sotiropoulos, Georgios C; Paul, Andreas; Hoyer, Dieter P

2017-06-01

Recently, the postoperative Model for End stage Liver Disease score (POPMELD) was suggested as a definition of postoperative graft dysfunction and a predictor of outcome after liver transplantation (LT). The aim of the present study was to validate this concept in the context of extended criteria donor (ECD) organs. Single-center prospectively collected data (OPAL study/01/11-12/13) of 116 ECD LTs were utilized. For each recipient, the Model for End stage Liver Disease (MELD) score was calculated for 7 postoperative days (PODs). The ability of international normalized ratio, bilirubin, aspartate aminotransferase, Donor Risk Index, a recent definition of early allograft dysfunction, and the POPMELD was compared to predict 90-day graft loss. Predictive abilities were compared by receiver operating characteristic curves, sensitivity and specificity, and positive and negative predictive values. The median Donor Risk Index was 1.8. In all, 60.3% of recipients were men [median age of 54 (23-68) years]. The median POD1-7 peak-aspartate aminotransferase value was 1052 (194-17 577) U/l. The rate of early allograft dysfunction was 22.4%. The 90-day graft survival was 89.7%. Out of possible predictors of the 90-day graft loss MELD on POD5 was the best predictor of outcome (area under the curve=0.84). A MELD score of 16 or more on POD5 predicted the 90-day graft loss with a specificity of 80.8%, a sensitivity of 81.8%, and a positive and negative predictive value of 31 and 97.7%. A MELD score of 16 or more on POD5 is an excellent predictor of outcome in ECD donor LT. Routine evaluation of POPMELD scores might support clinical decision-making and should be reported routinely in clinical trials.

Adult Height, Prevalent Coronary Artery Calcium Score, and Incident Cardiovascular Disease Outcomes in a Multiethnic Cohort.

PubMed

Yeboah, Joseph; Blaha, Michael J; Michos, Erin D; Qureshi, Waqas; Miedema, Michael; Flueckiger, Peter; Rodriguez, Carlos J; Szklo, Moyses; Bertoni, Alain G

2017-10-15

We assessed the relationships among adult height, coronary artery calcium (CAC) score, incident atherosclerotic cardiovascular disease (ASCVD) events, and atrial fibrillation (AFib) in a multiethnic cohort. We used race/ethnicity-specific height (dichotomized by median value and in quartiles) as the predictor variable within the 4 racial/ethnic groups in the Multi-Ethnic Study of Atherosclerosis (n = 6,814). After a mean of 10.2 years of follow-up (2000-2012), 556 ASCVD events (8.2%) and 539 AFib events (7.9%) occurred. Adult height was not associated with prevalent CAC score (ln(CAC + 1) or categories). Tall stature (i.e., race/ethnicity-specific height ≥median) had a significant but opposite association with future ASCVD and AFib (hazard ratios were 0.72 (95% confidence interval: 0.56, 0.92) and 1.38 (95% confidence interval: 1.07, 1.79), respectively). We observed a gradient-response but opposite association between quartiles of race/ethnicity-specific height and ASCVD/AFib events in our multivariable models. A formal test of interaction between race/ethnicity-specific height and sex was not significant in the ASCVD model (P = 0.78) but was significant in the AFib model (P = 0.03). Tall stature was associated (in a gradient-response fashion) with reduced risk of ASCVD events and increased risk of AFib. Adult height may signal interactions between genetic and environmental factors and may provide risk information independent of current traditional risk factors and CAC score. © The Author(s) 2017. Published by Oxford University Press on behalf of the Johns Hopkins Bloomberg School of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Patient-centered disease management (PCDM) for heart failure: study protocol for a randomised controlled trial.

PubMed

Bekelman, David B; Plomondon, Mary E; Sullivan, Mark D; Nelson, Karin; Hattler, Brack; McBryde, Connor; Lehmann, Kenneth G; Potfay, Jonathan; Heidenreich, Paul; Rumsfeld, John S

2013-07-09

Chronic heart failure (HF) disease management programs have reported inconsistent results and have not included comorbid depression management or specifically focused on improving patient-reported outcomes. The Patient Centered Disease Management (PCDM) trial was designed to test the effectiveness of collaborative care disease management in improving health status (symptoms, functioning, and quality of life) in patients with HF who reported poor HF-specific health status. Patients with a HF diagnosis at four VA Medical Centers were identified through population-based sampling. Patients with a Kansas City Cardiomyopathy Questionnaire (KCCQ, a measure of HF-specific health status) score of < 60 (heavy symptom burden and impaired quality of life) were invited to enroll in the PCDM trial. Enrolled patients were randomized to receive usual care or the PCDM intervention, which included: (1) collaborative care management by VA clinicians including a nurse, cardiologist, internist, and psychiatrist, who worked with patients and their primary care providers to provide guideline-concordant care management, (2) home telemonitoring and guided patient self-management support, and (3) screening and treatment for comorbid depression. The primary study outcome is change in overall KCCQ score. Secondary outcomes include depression, medication adherence, guideline-based care, hospitalizations, and mortality. The PCDM trial builds on previous studies of HF disease management by prioritizing patient health status, implementing a collaborative care model of health care delivery, and addressing depression, a key barrier to optimal disease management. The study has been designed as an 'effectiveness trial' to support broader implementation in the healthcare system if it is successful. Unique identifier: NCT00461513.

Family structure, experiences with end-of-life decision making, and who asked about advance directives impacts advance directive completion rates.

PubMed

Van Scoy, Lauren J; Howrylak, Judie; Nguyen, Anhthu; Chen, Melodie; Sherman, Michael

2014-10-01

Advance directives are an important but underutilized resource. Reasons for this underutilization need to be determined. We investigated factors associated with completion of advance directives among inpatients. We conducted prospective, structured interviews on family structure, health care, disease, and end-of-life experiences. We compared those with completed advance directives and those without. We interviewed 130 inpatients in an urban university hospital. We used bivariate analysis and logistic regression to identify characteristics of patients with living wills and health care proxies versus patients without them. Twenty-one percent of patients had a living will and 35% had a health care proxy. Patients with completed living wills were older (p≤0.0046), had more comorbidities (p=0.018), were widowed (p=0.02), and were more often admitted with chronic disease (p=0.009) compared to those without living wills. Patients with health care proxies were older (p<0.001), had religious affiliations (p=0.04), more children (p=0.03), and more often widowed (p≤0.001) than those without health care proxies. Patients were 10.8 times (95% confidence interval [CI] 4.59-25.3), 46.5 times (95% CI 15.1-139.4), and 68.6 times (95% CI 13.0-361.3) more likely to complete a living will when asked by medical staff, legal staff, or family and friends, respectively, than those not asked. Patients with health care proxies were 1.68 times (95% CI 0.81-3.47), 4.34 times (95% CI 1.50-12.6), and 18.0 times (95% CI 2.03-158.8) more likely to have been asked by the same groups. Patients with experience in end-of-life decision-making were 2.54 times more likely to possess a living will (95%CI 1.01-6.42) and 3.53 times more likely to possess a health care proxy (95% CI 1.51-8.25) than those without experiences. Having been asked about advance directives by medical staff, legal staff, or family and friends increases the likelihood that patients will possess an advance directive. Those with prior experience with end-of-life decision-making are more likely to possess an advance directive. Family structure and health care utilization also impacts possession of advance directives.

A Tale of Two Lakes: Catchment-Specific Responses to Late Holocene Cooling in Northwest Iceland

NASA Astrophysics Data System (ADS)

Crump, S. E.; Florian, C. R.; Miller, G. H.; Geirsdottir, A.; Zalzal, K.

2015-12-01

Lake sediments are frequently utilized for reconstructing paleoclimate in the Arctic, particularly in Iceland, where high sedimentation rates and abundant tephra layers allow for the development high-resolution, well-dated records. However, when developing climate records using biological proxies, catchment-specific processes must be understood and separated from the primary climate signal in order to develop accurate reconstructions. In this study, we compare proxy records (biogenic silica [BSi], C:N, ∂13C, and algal pigments) of the last 2 ka from two nearby lakes in northwest Iceland in order to elucidate how different catchments respond to similar climate history. Torfdalsvatn and Bæjarvötn are two coastal lakes located 60 km apart; mean summer temperatures are highly correlated between the two sites over the instrumental record, and likely for the past 2 ka as well. Consistent with other Icelandic records, both lakes record cooling as decreasing aquatic productivity (BSi) over the last 2 ka. Both sediment cores also record the onset of landscape destabilization, reflected by increased terrestrial input (C:N and ∂13C), which suggests an intensification of cooling. However, the timing and magnitude of this shift differ markedly between lakes. Biological proxies indicate gradual landscape destabilization beginning ~900 AD at Torfdalsvatn in contrast to a sharper, more intense landscape destabilization at ~1400 AD at Bæjarvötn. Because temperatures at the two lakes are well correlated, contrasting proxy responses are likely the result of catchment-specific thresholds and processes. Specifically, a steeper catchment at Bæjarvötn may allow for a more pronounced influx of terrestrial material as the critical shear stress for soil erosion is surpassed more readily. The impact of human colonization on erosion rates is also critical to assess, and recent developments in lipid biomarkers will allow for more precise reconstructions of human activity in each catchment.

Geostatistical modelling of soil-transmitted helminth infection in Cambodia: do socioeconomic factors improve predictions?

PubMed

Karagiannis-Voules, Dimitrios-Alexios; Odermatt, Peter; Biedermann, Patricia; Khieu, Virak; Schär, Fabian; Muth, Sinuon; Utzinger, Jürg; Vounatsou, Penelope

2015-01-01

Soil-transmitted helminth infections are intimately connected with poverty. Yet, there is a paucity of using socioeconomic proxies in spatially explicit risk profiling. We compiled household-level socioeconomic data pertaining to sanitation, drinking-water, education and nutrition from readily available Demographic and Health Surveys, Multiple Indicator Cluster Surveys and World Health Surveys for Cambodia and aggregated the data at village level. We conducted a systematic review to identify parasitological surveys and made every effort possible to extract, georeference and upload the data in the open source Global Neglected Tropical Diseases database. Bayesian geostatistical models were employed to spatially align the village-aggregated socioeconomic predictors with the soil-transmitted helminth infection data. The risk of soil-transmitted helminth infection was predicted at a grid of 1×1km covering Cambodia. Additionally, two separate individual-level spatial analyses were carried out, for Takeo and Preah Vihear provinces, to assess and quantify the association between soil-transmitted helminth infection and socioeconomic indicators at an individual level. Overall, we obtained socioeconomic proxies from 1624 locations across the country. Surveys focussing on soil-transmitted helminth infections were extracted from 16 sources reporting data from 238 unique locations. We found that the risk of soil-transmitted helminth infection from 2000 onwards was considerably lower than in surveys conducted earlier. Population-adjusted prevalences for school-aged children from 2000 onwards were 28.7% for hookworm, 1.5% for Ascaris lumbricoides and 0.9% for Trichuris trichiura. Surprisingly, at the country-wide analyses, we did not find any significant association between soil-transmitted helminth infection and village-aggregated socioeconomic proxies. Based also on the individual-level analyses we conclude that socioeconomic proxies might not be good predictors at an aggregated large-scale analysis due to their large between- and within-village heterogeneity. Specific information of both the infection risk and potential predictors might be needed to obtain any existing association. The presented soil-transmitted helminth infection risk estimates for Cambodia can be used for guiding and evaluating control and elimination efforts. Copyright © 2014. Published by Elsevier B.V.

Validity of the Montreal Cognitive Assessment Screener in Adolescents and Young Adults With and Without Congenital Heart Disease.

PubMed

Pike, Nancy A; Poulsen, Marie K; Woo, Mary A

Cognitive deficits are common, long-term sequelae in children and adolescents with congenital heart disease (CHD) who have undergone surgical palliation. However, there is a lack of a validated brief cognitive screening tool appropriate for the outpatient setting for adolescents with CHD. One candidate instrument is the Montreal Cognitive Assessment (MoCA) questionnaire. The purpose of the research was to validate scores from the MoCA against the General Memory Index (GMI) of the Wide Range Assessment of Memory and Learning, 2nd Edition (WRAML2), a widely accepted measure of cognition/memory, in adolescents and young adults with CHD. We administered the MoCA and the WRAML2 to 156 adolescents and young adults ages 14-21 (80 youth with CHD and 76 healthy controls who were gender and age matched). Spearman's rank order correlations were used to assess concurrent validity. To assess construct validity, the Mann-Whitney U test was used to compare differences in scores in youth with CHD and the healthy control group. Receiver operating characteristic curves were created and area under the curve, sensitivity, specificity, positive predictive value, and negative predictive value were also calculated. The MoCA median scores in the CHD versus healthy controls were (23, range 15-29 vs. 28, range 22-30; p < .001), respectively. With the screening cutoff scores at <26 points for the MoCA and 85 for GMI (<1 SD, M = 100, SD = 15), the CHD versus healthy control groups showed sensitivity of .96 and specificity of .67 versus sensitivity of .75 and specificity of .90, respectively, in the detection of cognitive deficits. A cutoff score of 26 on the MoCA was optimal in the CHD group; a cutoff of 25 had similar properties except for a lower negative predictive value. The area under the receiver operating characteristic curve (95% CI) for the MoCA was 0.84 (95% CI [0.75, 0.93], p < .001) and 0.84 (95% CI [0.62, 1.00], p = .02) for the CHD and controls, respectively. Scores on the MoCA were valid for screening to detect cognitive deficits in adolescents and young adults aged 14-21 with CHD when a cutoff score of 26 is used to differentiate youth with and without significant cognitive impairment. Future studies are needed in other adolescent disease groups with known cognitive deficits and healthy populations to explore the generalizability of validity of MoCA scores in adolescents and young adults.

Identification of Balance Deficits in People with Parkinson Disease; is the Sensory Organization Test Enough?

PubMed

Gera, G; Freeman, D L; Blackinton, M T; Horak, F B; King, L

2016-02-01

Balance deficits in people with Parkinson's disease can affect any of the multiple systems encompassing balance control. Thus, identification of the specific deficit is crucial in customizing balance rehabilitation. The sensory organization test, a test of sensory integration for balance control, is sometimes used in isolation to identify balance deficits in people with Parkinson's disease. More recently, the Mini-Balance Evaluations Systems Test, a clinical scale that tests multiple domains of balance control, has begun to be used to assess balance in patients with Parkinson's disease. The purpose of our study was to compare the use of Sensory Organization Test and Mini-Balance Evaluations Systems Test in identifying balance deficits in people with Parkinson's disease. 45 participants (27M, 18F; 65.2 ± 8.2 years) with idiopathic Parkinson's disease participated in the cross-sectional study. Balance assessment was performed using the Sensory Organization Test and the Mini-Balance Evaluations Systems Test. People were classified into normal and abnormal balance based on the established cutoff scores (normal balance: Sensory Organization Test >69; Mini-Balance Evaluations Systems Test >73). More subjects were classified as having abnormal balance with the Mini-Balance Evaluations Systems Test (71% abnormal) than with the Sensory Organization Test (24% abnormal) in our cohort of people with Parkinson's disease. There were no subjects with a normal Mini-Balance Evaluations Systems Test score but abnormal Sensory Organization Test score. In contrast, there were 21 subjects who had an abnormal Mini-Balance Evaluations Systems Test score but normal Sensory Organization Test scores. Findings from this study suggest that investigation of sensory integration deficits, alone, may not be able to identify all types of balance deficits found in patients with Parkinson's disease. Thus, a comprehensive approach should be used to test of multiple balance systems to provide customized rehabilitation.

Testing of candidate non-lethal sampling methods for detection of Renibacterium salmoninarum in juvenile Chinook salmon Oncorhynchus tshawytscha

USGS Publications Warehouse

Elliott, Diane G.; McKibben, Constance L.; Conway, Carla M.; Purcell, Maureen K.; Chase, Dorothy M.; Applegate, Lynn M.

2015-01-01

Non-lethal pathogen testing can be a useful tool for fish disease research and management. Our research objectives were to determine if (1) fin clips, gill snips, surface mucus scrapings, blood draws, or kidney biopsies could be obtained non-lethally from 3 to 15 g Chinook salmon Oncorhynchus tshawytscha, (2) non-lethal samples could accurately discriminate between fish exposed to the bacterial kidney disease agent Renibacterium salmoninarum and non-exposed fish, and (3) non-lethal samples could serve as proxies for lethal kidney samples to assess infection intensity. Blood draws and kidney biopsies caused ≥5% post-sampling mortality (Objective 1) and may be appropriate only for larger fish, but the other sample types were non-lethal. Sampling was performed over 21 wk following R. salmoninarum immersion challenge of fish from 2 stocks (Objectives 2 and 3), and nested PCR (nPCR) and real-time quantitative PCR (qPCR) results from candidate non-lethal samples were compared with kidney tissue analysis by nPCR, qPCR, bacteriological culture, enzyme-linked immunosorbent assay (ELISA), fluorescent antibody test (FAT) and histopathology/immunohistochemistry. R. salmoninarum was detected by PCR in >50% of fin, gill, and mucus samples from challenged fish. Mucus qPCR was the only non-lethal assay exhibiting both diagnostic sensitivity and specificity estimates >90% for distinguishing between R. salmoninarum-exposed and non-exposed fish and was the best candidate for use as an alternative to lethal kidney sample testing. Mucus qPCR R. salmoninarum quantity estimates reflected changes in kidney bacterial load estimates, as evidenced by significant positive correlations with kidney R. salmoninaruminfection intensity scores at all sample times and in both fish stocks, and were not significantly impacted by environmentalR. salmoninarum concentrations.

Nailfold videocapillaroscopy micro-haemorrhage and giant capillary counting as an accurate approach for a steady state definition of disease activity in systemic sclerosis.

PubMed

Sambataro, Domenico; Sambataro, Gianluca; Zaccara, Eleonora; Maglione, Wanda; Polosa, Riccardo; Afeltra, Antonella M V; Vitali, Claudio; Del Papa, Nicoletta

2014-10-09

Nailfold videocapillaroscopy (NVC) in systemic sclerosis (SSc) is a procedure commonly used for patient classification and subsetting, but not to define disease activity (DA). This study aimed to evaluate whether the number of micro-haemorrhages (MHE), micro-thrombosis (MT), giant capillaries (GC), and normal/dilated capillaries (Cs) in NVC could predict DA in SSc. Eight-finger NVC was performed in 107 patients with SSc, and the total number of MHE/MT, GC, and the mean number of Cs were counted and defined as number of micro-haemorrhages (NEMO), GC and Cs scores, respectively. The European Scleroderma Study Group (ESSG) index constituted the gold standard for DA assessment, and scores ≥ 3.5 and = 3 were considered indicative of high and moderate activity, respectively. NEMO and GC scores were positively correlated with ESSG index (R = 0.65, P < 0.0001, and R = 0.47, P <0.0001, respectively), whilst Cs score showed a negative correlation with that DA index (R = -0.30, P <0.001). The area under the curve (AUC) of receiver operating characteristic plots, obtained by NEMO score sensitivity and specificity values in classifying patients with ESSG index ≥ 3.5, was significantly higher than the corresponding AUC derived from either GC or Cs scores (P <0.03 and P <0.0006, respectively). A modified score, defined by the presence of a given number of MHE/MT and GC, had a good performance in classifying active patients (ESSG index ≥ 3, sensitivity 95.1%, specificity 84.8%, accuracy 88.7%). MHE/MT and GC appear to be good indicators of DA in SSc, and enhances the role of NVC as an easy technique to identify active patients.

[A case of Munchausen Syndrome by proxy in the context of folie a famille].

PubMed

Foto Özdemir, Dilşad; Gökler, Bahar; Evinç, Ş Gülin; Balseven Odabaşı, Aysun

2013-01-01

The occurrence of similar psychotic symptoms in two or more people is called shared paranoid disorder. In this disease, the person who exhibits psychotic symptoms first is the "primary patient". The symptoms are contracted by the other people through persuasion. This disorder is seen among people who share the same house or are emotionally bound. In some cases, shared paranoid disorder may include other diagnoses, such as Munchausen Syndrome. This report discusses the case of a six-year-old, sexually abused boy who, when admitted to the hospital at the age of 10, claimed to have been repeatedly sexually harassed by several different people. His family's frequent changes in hospitals, negative perceptions of and accusations against medical staff, and improper methods of responding to harassment led clinicians to a diagnosis of Munchausen by proxy syndrome. In addition, both parents believed the abuse story, suggesting a potential diagnosis of shared psychotic disorder. In the literature, Munchausen by proxy has rarely been reported with symptoms of sexual abuse. The psychotic symptoms were shared by the family, complicating the case. This report emphasizes that psychodynamic evaluations of Munchausen by proxy and shared psychotic disorder may be helpful in understanding underlying factors.

Longitudinal associations between BMI, waist circumference, and cardiometabolic risk in US youth: monitoring implications.

PubMed

Jago, R; Mendoza, J A; Chen, T; Baranowski, T

2013-03-01

This study examined whether change in body mass index (BMI) or waist circumference (WC) is associated with change in cardiometabolic risk factors and differences between cardiovascular disease specific and diabetes specific risk factors among adolescents. We also sought to examine any differences by gender or baseline body mass status. The article is a longitudinal analysis of pre- and post-data collected in the HEALTHY trial. Participants were 4,603 ethnically diverse adolescents who provided complete data at 6th and 8th grade assessments. The main outcome measures were percent change in the following cardiometabolic risk factors: fasting triglycerides, systolic and diastolic blood pressure, high density lipoprotein cholesterol, and glucose as well as a clustered metabolic risk score. Main exposures were change in BMI or WC z-score. Models were run stratified by gender; secondary models were additionally stratified by baseline BMI group (normal, overweight, or obese). Analysis showed that when cardiometabolic risk factors were treated as continuous variables, there was strong evidence (P < 0.001) that change in BMI z-score was associated with change in the majority of the cardiovascular risk factors, except fasting glucose and the combined risk factor score for both boys and girls. There was some evidence that change in WC z-score was associated with some cardiovascular risk factors, but change in WC z-score was consistently associated with changes in fasting glucose. In conclusion, routine monitoring of BMI should be continued by health professionals, but additional information on disease risk may be provided by assessing WC. Copyright © 2013 The Obesity Society.

Heterogeneity of Cognitive Anosognosia and its Variation with the Severity of Dementia in Patients with Alzheimer's Disease.

PubMed

Avondino, Emilie; Antoine, Pascal

2016-01-01

Currently, the lack of awareness of deficits, i.e., anosognosia, is a major obstacle in the healthcare circuit that delays the diagnosis of Alzheimer's disease (AD). However, a clear framework is lacking in the literature related to this phenomenon in terms of its definition, mechanisms, and objects. The aim of this study is to assess the different levels of cognitive anosognosia using a prediction-performance procedure and to identify the potential correlates of these levels. A sample of patients with probable AD was divided into three groups according to the severity of dementia (mild (MiD), moderate (MoD), and moderately severe (MSD) dementia), ranked according to the results of the Mini-Mental State Examination. We observed the following three scores: the real score, the prediction score, and the anosognosia score. These scores were calculated based on the prediction-performance task MISAwareness from the Dementia Rating Scale for cognitive processes (i.e., Attention, Initiation, Conceptualization, Construction, and Memory). We obtained a strong plateau effect between the MiD and MoD groups for anosognosia scores for actual performance or prediction for both the level of overall functioning and for specific processes. The sole exception was the result for memory processes. Moreover, the profiles of the patients' responses on the Memory subscale were substantially different and, indeed, opposite from those for the other processes. The main results confirm the multidimensionality of anosognosia and its variability with the stage of dementia and specifically implicate memory processes that indicate a cleavage between memory and other cognitive functions.

Detailed analysis of the Japanese version of the Rapid Dementia Screening Test, revised version.

PubMed

Moriyama, Yasushi; Yoshino, Aihide; Muramatsu, Taro; Mimura, Masaru

2017-11-01

The number-transcoding task on the Japanese version of the Rapid Dementia Screening Test (RDST-J) requires mutual conversion between Arabic and Chinese numerals (209 to , 4054 to , to 681, to 2027). In this task, question and answer styles of Chinese numerals are written horizontally. We investigated the impact of changing the task so that Chinese numerals are written vertically. Subjects were 211 patients with very mild to severe Alzheimer's disease and 42 normal controls. Mini-Mental State Examination scores ranged from 26 to 12, and Clinical Dementia Rating scores ranged from 0.5 to 3. Scores of all four subtasks of the transcoding task significantly improved in the revised version compared with the original version. The sensitivity and specificity of total scores ≥9 on the RDST-J original and revised versions for discriminating between controls and subjects with Clinical Dementia Rating scores of 0.5 were 63.8% and 76.6% on the original and 60.1% and 85.8% on revised version. The revised RDST-J total score had low sensitivity and high specificity compared with the original RDST-J for discriminating subjects with Clinical Dementia Rating scores of 0.5 from controls. © 2017 Japanese Psychogeriatric Society.

A study of patients with spinal disease using Maudsley Personality Inventory.

PubMed

Kasai, Yuichi; Takegami, Kenji; Uchida, Atsumasa

2004-02-01

We administered the Maudsley Personality Inventory (MPI) preoperatively to 303 patients with spinal diseases about to undergo surgery. Patients younger than 20 years, patients previously treated in the Department of Psychiatry, and patients with poor postoperative results were excluded. Patients with N-scores (neuroticism scale) of 39 points or greater or L-scores (lie scale) of 26 points or greater were regarded as "abnormal." Based on clinical definitions we identified 24 "problem patients" during the course and categorized them as "Unsatisfied," "Indecisive," "Doctor shoppers," or "Distrustful." Preoperative MPI categorized 26 patients as abnormal; 22 patients categorized as abnormal became problem patients ( p<0.001). MPI sensitivity and specificity was 84.6% and 99.3%, respectively. Preoperative MPI to patients with spinal disease was found to be useful in detecting problem patients.

A Network-Based Classification Model for Deriving Novel Drug-Disease Associations and Assessing Their Molecular Actions

PubMed Central

Oh, Min; Ahn, Jaegyoon; Yoon, Youngmi

2014-01-01

The growing number and variety of genetic network datasets increases the feasibility of understanding how drugs and diseases are associated at the molecular level. Properly selected features of the network representations of existing drug-disease associations can be used to infer novel indications of existing drugs. To find new drug-disease associations, we generated an integrative genetic network using combinations of interactions, including protein-protein interactions and gene regulatory network datasets. Within this network, network adjacencies of drug-drug and disease-disease were quantified using a scored path between target sets of them. Furthermore, the common topological module of drugs or diseases was extracted, and thereby the distance between topological drug-module and disease (or disease-module and drug) was quantified. These quantified scores were used as features for the prediction of novel drug-disease associations. Our classifiers using Random Forest, Multilayer Perceptron and C4.5 showed a high specificity and sensitivity (AUC score of 0.855, 0.828 and 0.797 respectively) in predicting novel drug indications, and displayed a better performance than other methods with limited drug and disease properties. Our predictions and current clinical trials overlap significantly across the different phases of drug development. We also identified and visualized the topological modules of predicted drug indications for certain types of cancers, and for Alzheimer’s disease. Within the network, those modules show potential pathways that illustrate the mechanisms of new drug indications, including propranolol as a potential anticancer agent and telmisartan as treatment for Alzheimer’s disease. PMID:25356910

On the trails of markers and proxies: the socio-cognitive technologies of human movement, knowledge assemblage, and their relevance to the etiology of nasopharyngeal carcinoma

PubMed Central

Turnbull, David

2011-01-01

Bacteria, pigs, rats, pots, plants, words, bones, stones, earrings, diseases, and genetic indicators of all varieties are markers and proxies for the complexity of interweaving trails and stories integral to understanding human movement and knowledge assemblage in Southeast Asia and around the world. Understanding human movement and knowledge assemblage is central to comprehending the genetic basis of disease, especially of a cancer like nasopharyngeal carcinoma. The problem is that the markers and trails, taken in isolation, do not all tell the same story. Human movement and knowledge assemblage are in constant interaction in an adaptive process of co-production with genes, terrain, climate, sea level changes, kinship relations, diet, materials, food and transport technologies, social and cognitive technologies, and knowledge strategies and transmission. Nasopharyngeal carcinoma is the outcome of an adaptive process involving physical, social, and genetic components. PMID:21272440

Assessment of Activity of Crohn Disease by Diffusion-Weighted Magnetic Resonance Imaging

PubMed Central

Li, Xue-hua; Sun, Can-hui; Mao, Ren; Zhang, Zhong-wei; Jiang, Xiao-song; Pui, Margaret H.; Chen, Min-hu; Li, Zi-ping

2015-01-01

Abstract To assess the diagnostic efficacy of diffusion-weighted MR imaging (DWI) for evaluating inflammatory activity in patients with Crohn's disease (CD). A total of 47 CD patients underwent MR enterography (MRE) and DWI using 3 b values of 50, 400, and 800 s/mm.2 Apparent diffusion coefficients (ADCs) of inflamed and normal bowel wall were calculated. The conventional MRE findings and DWI signal intensities were qualitatively scored from 0 to 3. The correlation between Crohn disease activity index (CDAI) and both ADCs and magnetic resonance imaging scores was analyzed. Receiver-operating characteristic curve analysis was used to determine the diagnostic accuracy of CD activity. Of the 47 patients, 25 were active CD (CDAI≥150) and 22 were inactive (CDAI<150). Diffusion-weighted MR imaging and MRE + DWI scores of active CD were significantly higher than that of inactive CD (both P < 0.001). Apparent diffusion coefficients in inflamed segments of active CD were lower than that of inactive CD (P < 0.001). The DWI scores (r = 0.74, P < 0.001), ADCs (r = −0.71, P < 0.001), MRE scores (r = 0.54, P < 0.001), and MRE + DWI scores (r = 0.66, P < 0.001) were all correlated with CDAI. The areas under the receiver-operating characteristics curves for ADCs, DWI scores, MRE scores, and MRE + DWI scores ranged from 0.83 to 0.98. The threshold ADC value of 1.17 × 10−3 mm2/s allowed differentiation of active from inactive CD with 100% sensitivity and 88% specificity. Diffusion-weighted MR imaging and ADC correlated with CD activity, and had excellent diagnostic accuracy for differentiating active from inactive CD. PMID:26512584

Salinity controls on Na incorporation in Red Sea planktonic foraminifera

NASA Astrophysics Data System (ADS)

Mezger, E. M.; de Nooijer, L. J.; Boer, W.; Brummer, G. J. A.; Reichart, G. J.

2016-12-01

Whereas several well-established proxies are available for reconstructing past temperatures, salinity remains challenging to assess. Reconstructions based on the combination of (in)organic temperature proxies and foraminiferal stable oxygen isotopes result in relatively large uncertainties, which may be reduced by application of a direct salinity proxy. Cultured benthic and planktonic foraminifera showed that Na incorporation in foraminiferal shell calcite provides a potential independent proxy for salinity. Here we present the first field calibration of such a potential proxy. Living planktonic foraminiferal specimens from the Red Sea surface waters were collected and analyzed for their Na/Ca content using laser ablation quadrupole inductively coupled plasma mass spectrometry. Using the Red Sea as a natural laboratory, the calibration covers a broad range of salinities over a steep gradient within the same water mass. For both Globigerinoides ruber and Globigerinoides sacculifer calcite Na/Ca increases with salinity, albeit with a relatively large intraspecimen and interspecimen variability. The field-based calibration is similar for both species from a salinity of 36.8 up to 39.6, while values for G. sacculifer deviate from this trend in the northernmost transect. It is hypothesized that the foraminifera in the northernmost part of the Red Sea are (partly) expatriated and hence should be excluded from the Na/Ca-salinity calibration. Incorporation of Na in foraminiferal calcite therefore provides a potential proxy for salinity, although species-specific calibrations are still required and more research on the effect of temperature is needed.

Autoimmune and Atopic Disorders and Risk of Classical Hodgkin Lymphoma

PubMed Central

Hollander, Peter; Rostgaard, Klaus; Smedby, Karin E.; Chang, Ellen T.; Amini, Rose-Marie; de Nully Brown, Peter; Glimelius, Bengt; Adami, Hans-Olov; Melbye, Mads; Glimelius, Ingrid; Hjalgrim, Henrik

2015-01-01

Results from previous investigations have shown associations between the risk of Hodgkin lymphoma (HL) and a history of autoimmune and atopic diseases, but it remains unknown whether these associations apply to all types of HL or only to specific subtypes. We investigated immune diseases and the risk of classical HL in a population-based case-control study that included 585 patients and 3,187 controls recruited from October 1999 through August 2002. We collected information on immune diseases through telephone interviews and performed serological analyses of specific immunoglobulin E reactivity. Tumor Epstein-Barr virus (EBV) status was determined for 498 patients. Odds ratios with 95% confidence intervals were calculated using logistic regression analysis. Rheumatoid arthritis was associated with a higher risk of HL (odds ratio (OR) = 2.63; 95% confidence interval (CI): 1.47, 4.70), especially EBV-positive HL (OR = 3.18; 95% CI: 1.23, 8.17), and with mixed-cellularity HL (OR = 4.25; 95% CI: 1.66, 10.90). HL risk was higher when we used proxies of severe rheumatoid arthritis, such as ever having received daily rheumatoid arthritis medication (OR = 3.98; 95% CI: 2.08, 7.62), rheumatoid arthritis duration of 6–20 years (OR = 3.80; 95% CI: 1.72, 8.41), or ever having been hospitalized for rheumatoid arthritis (OR = 7.36; 95% CI: 2.95, 18.38). Atopic diseases were not associated with the risk of HL. EBV replication induced by chronic inflammation in patients with autoimmune diseases might explain the higher risk of EBV-positive HL. PMID:26346543

Correlated responses of respiratory disease and immune capacity traits of Landrace pigs selected for Mycoplasmal pneumonia of swine (MPS) lesion.

PubMed

Okamura, Toshihiro; Maeda, Kouki; Onodera, Wataru; Kadowaki, Hiroshi; Kojima-Shibata, Chihiro; Suzuki, Eisaku; Uenishi, Hirohide; Satoh, Masahiro; Suzuki, Keiichi

2016-09-01

Five generations of Landrace pigs selected for average daily gain, backfat thickness, Mycoplasmal pneumonia of swine (MPS) lesion score, and plasma cortisol levels, was executed to decrease the MPS lesion score. Genetic parameters and correlated genetic responses for respiratory disease and peripheral blood immune traits were estimated in 1395 Landrace pigs. We estimated the negative genetic correlation of MPS lesion score with phagocytic activity (PA) at 7 weeks of age (-0.67). The breeding values of PA at 7 weeks of age and 105 kg body weight and the correlated selection response of the ratio of granular leukocytes to lymphocytes at 105 kg body weight were significantly increased, and sheep red blood cell-specific antibody production (AP) was significantly decreased in a selection-dependent manner. Increasing of natural immunological indicators (e.g. PA) and decreasing of humoral immunological indicator (e.g. AP) were observed due to genetically decreasing MPS lesion score. © 2015 Japanese Society of Animal Science.

Water Table Depth Reconstruction in Ombrotrophic Peatlands Using Biomarker Abundance Ratios and Compound-Specific Hydrogen Isotope Composition

NASA Astrophysics Data System (ADS)

Nichols, J. E.; Jackson, S. T.; Booth, R. K.; Pendall, E. G.; Huang, Y.

2005-12-01

Sediment cores from ombrotrophic peat bogs provide sensitive records of changes in precipitation/evaporation (P/E) balance. Various proxies have been developed to reconstruct surface moisture conditions in peat bogs, including testate amoebae, plant macrofossils, and peat humification. Studying species composition of testate amoeba assemblages is time consuming and requires specialized training. Humification index can be influenced by environmental factors other than moisture balance. The plant macrofossil proxy is less quantitative and cannot be performed on highly decomposed samples. We demonstrate that the ratio of C23 alkane to C29 alkane abundance may provide a simple alternative or complementary means of tracking peatland water-table depth. Data for this proxy can be collected quickly using a small sample (100 mg dry). Water-table depth decreases during drought, and abundance of Sphagnum, the dominant peat-forming genus, decreases as vascular plants increase. Sphagnum moss produces mainly medium chain-length alkanes (C21-C25) while vascular plants (grasses and shrubs) produce primarily longer chain-length alkanes (C27-C31). Therefore, C23:C29 n-alkane ratios quantitatively track the water table depth fluctuations in peat bogs. We compared C23:C29 n-alkane ratios in a core from Minden Bog (southeastern Michigan) with water table depth reconstructions based on testate-amoeba assemblages and humification. The 184-cm core spans the past ~3kyr of continuous peat deposition in the bog. Our results indicate that the alkane ratios closely track the water table depth variations, with C29 most abundant during droughts. We also explored the use of D/H ratios in Sphagnum biomarkers as a water-table depth proxy. Compound-specific hydrogen isotope ratio analyses were performed on Sphagnum biomarkers: C23 and C25 alkane and C24 acid. Dry periods are represented in these records by an enrichment of deuterium in these Sphagnum-specific compounds. These events also correlate with drought events in the testate amoeba record and the alkane abundance ratio record. These biogeochemical proxies can be used in paleohydrological studies of ombrotrophic bogs and provide a new and complimentary source of data from these underutilized paleoclimate archives.

Paleoaltimetry proxies based on bacterial branched tetraether membrane lipids in soils

NASA Astrophysics Data System (ADS)

Yang, Huan; Xiao, Wenjie; Jia, Chengling; Xie, Shucheng

2015-03-01

The MBT/CBT (Methylation Index of Branched Tetraethers/Cyclisation ratio of Branched Tetraether) proxy, a terrestrial paleothermometer based on bacterial branched glycerol dialkyl glycerol tetraethers (bGDGTs), was employed to indicate altimetry; however, the mechanistic control on this proxy is still ambiguous. Here, we investigated the bGDGTs' distribution and associated environmental factors along an altitude transect of Mt. Shennongjia in China in order to determine the applicability of bGDGT-based proxies to altimetry reconstruction. The MBT index exhibits only a weak correlation with estimated mean annual air temperature (MATe, estimated according to the meteorological record and lapse rate) or altitude. Likewise, MBT shows weak or no relationship with temperature or altitude at four other mountains (Mts. Meghalaya, Jianfengling, Gongga, and Rungwe). It is notable that mean annual air temperature (MAT) or altitude estimated by the MBT/CBT proxy largely relies on CBT, rather than on MBT, which was generally acknowledged. The poor relationship between MBTand MATe for Mt. Shennongjia can be ascribed to the insensitive response of bGDGT-I to temperature. Our data from this mountain imply that care should be taken if the MBT/CBT proxy is employed as an indication of paleoaltimetry. We propose that the fractional abundance of bGDGTs may be a better paleoaltimeter than the MBT/CBT proxy, because specific bGDGT subsets that might show the most sensitive response to temperature can be preferentially selected using a statistical method and used to establish local calibration. This local calibration was applied to Mt. Shennongjia and apparently improves the accuracy of temperature and altimetry reconstruction. The differential response of bGDGTs to temperature among mountains suggests that local calibrations are needed to better constrain the altimetry.

Biomarker progressions explain higher variability in stage-specific cognitive decline than baseline values in Alzheimer disease.

PubMed

Dodge, Hiroko H; Zhu, Jian; Harvey, Danielle; Saito, Naomi; Silbert, Lisa C; Kaye, Jeffrey A; Koeppe, Robert A; Albin, Roger L

2014-11-01

It is unknown which commonly used Alzheimer disease (AD) biomarker values-baseline or progression-best predict longitudinal cognitive decline. 526 subjects from the Alzheimer's Disease Neuroimaging Initiative (ADNI). ADNI composite memory and executive scores were the primary outcomes. Individual-specific slope of the longitudinal trajectory of each biomarker was first estimated. These estimates and observed baseline biomarker values were used as predictors of cognitive declines. Variability in cognitive declines explained by baseline biomarker values was compared with variability explained by biomarker progression values. About 40% of variability in memory and executive function declines was explained by ventricular volume progression among mild cognitive impairment patients. A total of 84% of memory and 65% of executive function declines were explained by fluorodeoxyglucose positron emission tomography (FDG-PET) score progression and ventricular volume progression, respectively, among AD patients. For most biomarkers, biomarker progressions explained higher variability in cognitive decline than biomarker baseline values. This has important implications for clinical trials targeted to modify AD biomarkers. Copyright © 2014 The Alzheimer's Association. Published by Elsevier Inc. All rights reserved.

A pedigree-based proxy measure of genetic predisposition of drinking and alcohol use among female sex workers in China: a cross-sectional study.

PubMed

Zhang, Chen; Li, Xiaoming; Liu, Yu; Qiao, Shan; Su, Shaobing; Zhang, Liying; Zhou, Yuejiao

2017-02-01

Scientific evidence has suggested that genetic factors accounted for more than half of the vulnerability of developing alcohol use problems. However, collecting genetic data poses a significant challenge for most population-based behavioral studies. The aim of this study was to assess the utilities of a pedigree-based proxy measure of genetic predisposition of drinking (GPD) and its effect on alcohol use behaviors as well as its interactions with personal and environmental factors. In the current study, cross-sectional data were collected from 700 female sex workers (FSW) in Guangxi, China. Participants provided information on a pedigree-based proxy measure of GPD and their alcohol use behaviors. Chi-square and independent t-test was applied for examining the bivariate associations between GPD and alcohol use behaviors; multivariate and ordinal regression models were used to examine the effect of GPD on alcohol use. This study found that women with a higher composite score of GPD tended to have a higher risk of alcohol use problem compared to their counterparts (p < .05). GPD was a significant predictor of alcohol use problems (p < .05), especially among women who had mental health issues or lack of health cares. The pedigree-based measure provided a useful proxy of GPD among participants. Both FSW's mental health and health care access interact with GPD and affect their drinking patterns. By understanding the genetic basis of alcohol use, we can develop scalable and efficacious interventions that will take into consideration the individual risk profile and environmental influences.

Preservation of the capacity to appoint a proxy decision maker: implications for dementia research.

PubMed

Kim, Scott Y H; Karlawish, Jason H; Kim, H Myra; Wall, Ian F; Bozoki, Andrea C; Appelbaum, Paul S

2011-02-01

Research involving persons with impaired decision-making capacity (such as persons with Alzheimer disease [AD]) remains ethically challenging, especially when the research involves significant risk. If individuals incapable of consenting to research studies were able to appoint a research proxy, it would allow for an appointed surrogate (rather than a de facto surrogate) to represent the subject. To assess the extent to which persons with AD retain their capacity to appoint a research proxy. Interview study. Academic research. One hundred eighty-eight persons with AD were interviewed for their capacity to appoint a proxy for research and to provide consent to 2 hypothetical research scenarios, a lower-risk randomized clinical trial testing a new drug (drug RCT) and a higher-risk randomized clinical trial testing neurosurgical cell implants using a sham control condition (neurosurgical RCT). Categorical capacity status for each subject was determined by independent videotaped reviews of capacity interviews by 5 experienced psychiatrists. Categorical capacity determinations for the capacity to appoint a research proxy, capacity to consent to a drug RCT, and capacity to consent to a neurosurgical RCT. Data showed that 37.7% (40 of 106) of those deemed incapable of consenting to the drug RCT and 54.8% (86 of 157) of those deemed incapable of consenting to the neurosurgical RCT were found capable of appointing a research proxy. Only 7 of 186 (3.8%) were deemed capable of consenting to the neurosurgical RCT by all 5 psychiatrists. A substantial proportion of persons with AD who were thought incapable of consenting to lower-risk or higher-risk studies have preserved capacity for appointing a research proxy. Because few persons are found to be unequivocally capable of providing independent consent to higher-risk AD research, providing for an appointed surrogate even after the onset of AD, which might best be done in the early stages of the illness, may help address key ethical challenges to AD research.

Statin use and kidney cancer outcomes: A propensity score analysis.

PubMed

Nayan, Madhur; Finelli, Antonio; Jewett, Michael A S; Juurlink, David N; Austin, Peter C; Kulkarni, Girish S; Hamilton, Robert J

2016-11-01

Studies evaluating the association between statin use and survival outcomes in renal cell carcinoma have demonstrated conflicting results. Our objective was to evaluate this association in a large clinical cohort by using propensity score methods to reduce confounding from measured covariates. We performed a retrospective review of 893 patients undergoing nephrectomy for unilateral, M0 renal cell carcinoma between 2000 and 2014 at a tertiary academic center. Inverse probability of treatment weights were derived from a propensity score model based on clinical, surgical, and pathological characteristics. We used Cox proportional hazard models to evaluate the association between statin use and disease-free survival, cancer-specific survival, and overall survival in the sample weighted by the inverse probability of treatment weights. A secondary analysis was performed matching statin users 1:1 to statin nonusers on the propensity score. Of the 893 patients, 259 (29%) were on statins at the time of surgery. Median follow-up was 47 months (interquartile range: 20-80). Statin use was not significantly associated with disease-free survival (hazard ratio [HR] = 1.09, 95% CI: 0.65-1.81), cancer-specific survival (HR = 0.90, 95% CI: 0.40-2.01), or overall survival (HR = 0.89, 95% CI: 0.55-1.44). Similar results were observed when using propensity score matching. The present study found no significant association between statin use and kidney cancer outcomes. Population-based studies are needed to further evaluate the role of statins in kidney cancer therapy. Copyright © 2016 Elsevier Inc. All rights reserved.

Review article: scoring systems for assessing prognosis in critically ill adult cirrhotics.

PubMed

Cholongitas, E; Senzolo, M; Patch, D; Shaw, S; Hui, C; Burroughs, A K

2006-08-01

Cirrhotic patients admitted to intensive care units (ICU) still have poor outcomes. Some current ICU prognostic models [Acute Physiology and Chronic Health Evaluation (APACHE), Organ System Failure (OSF) and Sequential Organ Failure Assessment (SOFA)] were used to stratify cirrhotics into risk categories, but few cirrhotics were included in the original model development. Liver-specific scores [Child-Turcotte-Pugh (CTP) and model for end-stage liver disease (MELD)] could be useful in this setting. To evaluate whether ICU prognostic models perform better compared with liver-disease specific ones in cirrhotics admitted to ICU. We performed a structured literature review identifying clinical studies focusing on prognosis and risk factors for mortality in adult cirrhotics admitted to ICU. We found 21 studies (five solely dealing with gastrointestinal bleeding) published during the last 20 years (54-420 patients in each). APACHE II and III, SOFA and OSF had better discrimination for correctly predicting death compared with the CTP score. The MELD score was evaluated only in one study and had good predictive accuracy [receiver operator characteristic (ROC) curve: 0.81). Organ dysfunction models (OSF, SOFA) were superior compared with APACHE II and III (ROC curve: range 0.83-0.94 vs. 0.66-0.88 respectively). Cardiovascular, liver and renal system dysfunction were more frequently independently associated with mortality. General-ICU models had better performance in cirrhotic populations compared with CTP score; OSF and SOFA had the best predictive ability. Further prospective and validation studies are needed.

Disease-specific dynamic biomarkers selected by integrating inflammatory mediators with clinical informatics in ARDS patients with severe pneumonia.

PubMed

Chen, Chengshui; Shi, Lin; Li, Yuping; Wang, Xiangdong; Yang, Shuanying

2016-06-01

Acute respiratory distress syndrome (ARDS) is a heterogeneous syndrome that occurs as a result of various risk factors, including either direct or indirect lung injury, and systemic inflammation triggered also by severe pneumonia (SP). SP-ARDS-associated morbidity and mortality remains high also due to the lack of disease-specific biomarkers. The present study aimed at identifying disease-specific biomarkers in SP or SP-ARDS by integrating proteomic profiles of inflammatory mediators with clinical informatics. Plasma was sampled from the healthy as controls or patients with SP infected with bacteria or infection-associated SP-ARDS on the day of admission, day 3, and day 7. About 15 or 52 cytokines showed significant difference between SP and SP-ARDS patients with controls or 13 between SP-ARDS with SP alone and controls, including bone morphogenetic protein-15 (BMP-15), chemokine (C-X-C motif) ligand 16 (CXCL16), chemokine (C-X-C motif) receptor 3 (CXCR3), interleukin-6 (IL-6), protein NOV homolog (NOV/CCN3), glypican 3, insulin-like growth factor binding protein 4 (IGFBP-4), IL-5, IL-5 R alpha, IL-22 BP, leptin, MIP-1d, and orexin B with a significant correlation with Digital Evaluation Score System (DESS) scores. ARDS patients with overexpressed IL-6, CXCL16, or IGFBP-4 had significantly longer hospital stay and higher incidence of secondary infection. We also found higher levels of those mediators were associated with poor survival rates in patients with lung cancer and involved in the process of the epithelial mesenchymal transition of alveolar epithelial cells. Our preliminary study suggested that integration of proteomic profiles with clinical informatics as part of clinical bioinformatics is important to validate and optimize disease-specific and disease-staged biomarkers.

Patient-Derived iPSCs and iNs-Shedding New Light on the Cellular Etiology of Neurodegenerative Diseases.

PubMed

Tang, Bor Luen

2018-05-08

Induced pluripotent stem cells (iPSCs) and induced neuronal (iN) cells are very much touted in terms of their potential promises in therapeutics. However, from a more fundamental perspective, iPSCs and iNs are invaluable tools for the postnatal generation of specific diseased cell types from patients, which may offer insights into disease etiology that are otherwise unobtainable with available animal or human proxies. There are two good recent examples of such important insights with diseased neurons derived via either the iPSC or iN approaches. In one, induced motor neurons (iMNs) derived from iPSCs of Amyotrophic lateral sclerosis/Frontotemporal dementia (ALS/FTD) patients with a C9orf72 repeat expansion revealed a haploinsufficiency of protein function resulting from the intronic expansion and deficiencies in motor neuron vesicular trafficking and lysosomal biogenesis that were not previously obvious in knockout mouse models. In another, striatal medium spinal neurons (MSNs) derived directly from fibroblasts of Huntington’s disease (HD) patients recapitulated age-associated disease signatures of mutant Huntingtin (mHTT) aggregation and neurodegeneration that were not prominent in neurons differentiated indirectly via iPSCs from HD patients. These results attest to the tremendous potential for pathologically accurate and mechanistically revealing disease modelling with advances in the derivation of iPSCs and iNs.

Background sequence characteristics influence the occurrence and severity of disease-causing mtDNA mutations

PubMed Central

Wei, Wei; Hudson, Gavin

2017-01-01

Inherited mitochondrial DNA (mtDNA) mutations have emerged as a common cause of human disease, with mutations occurring multiple times in the world population. The clinical presentation of three pathogenic mtDNA mutations is strongly associated with a background mtDNA haplogroup, but it is not clear whether this is limited to a handful of examples or is a more general phenomenon. To address this, we determined the characteristics of 30,506 mtDNA sequences sampled globally. After performing several quality control steps, we ascribed an established pathogenicity score to the major alleles for each sequence. The mean pathogenicity score for known disease-causing mutations was significantly different between mtDNA macro-haplogroups. Several mutations were observed across all haplogroup backgrounds, whereas others were only observed on specific clades. In some instances this reflected a founder effect, but in others, the mutation recurred but only within the same phylogenetic cluster. Sequence diversity estimates showed that disease-causing mutations were more frequent on young sequences, and genomes with two or more disease-causing mutations were more common than expected by chance. These findings implicate the mtDNA background more generally in recurrent mutation events that have been purified through natural selection in older populations. This provides an explanation for the low frequency of mtDNA disease reported in specific ethnic groups. PMID:29253894

Characterisation of osteoprotegerin autoantibodies in coeliac disease.

PubMed

Real, Ana; Gilbert, Nick; Hauser, Barbara; Kennedy, Nick; Shand, Alan; Gillett, Helen; Gillett, Peter; Goddard, Clive; Cebolla, Ángel; Sousa, Carolina; Fraser, William D; Satsangi, Jack; Ralston, Stuart H; Riches, Philip L

2015-08-01

Autoantibodies neutralising the effect of the bone regulatory cytokine osteoprotegerin (OPG) have been described in a patient with severe osteoporosis and coeliac disease. This study aimed to determine the prevalence and epitope specificity of autoantibodies to OPG in patients with coeliac disease, and correlate their presence with bone mineral density. A direct enzyme-linked immunosorbent assay was developed and used to screen patients with coeliac disease for autoantibodies to OPG. Recombinant fragments of OPG were made to evaluate the epitope specificity and affinity of these antibodies. Phenotype information of the patients was obtained by case note review. Raised titres of antibodies to OPG were found in 7/71 (9.8 %) patients with coeliac disease, compared with 1/72 (1.4 %) non-coeliac osteoporosis clinic control patients (p < 0.05). Our results suggest that a polyclonal antibody response to OPG is raised in these patients capable of recognising different epitopes of OPG with varying affinity. The titre of OPG antibodies was associated with lower bone mineral density Z-score of the hip in coeliac patients on univariate (p < 0.05) and multivariate analysis including age, sex height and weight as covariates (p < 0.01). Polyclonal antibodies to OPG are more common in patients with coeliac disease and are independently associated with lower bone mineral density Z-scores of the hip. Further work is required to establish the clinical utility of testing for OPG antibodies.

IRIS II Study: Sensitivity and specificity of intact proinsulin, adiponectin, and the proinsulin/adiponectin ratio as markers for insulin resistance.

PubMed

Langenfeld, Matthias R; Forst, Thomas; Standl, Eberhard; Strotmann, Hermann-Josef; Lübben, Georg; Pahler, Sabine; Kann, Peter; Pfützner, Andreas

2004-12-01

This study was performed to compare the specificity and sensitivity of intact proinsulin, adiponectin, and their ratio (proinsulin/adiponectin) in the prediction of insulin resistance as assessed by the homeostasis model assessment (HOMA) score (> or =2 = resistant). Using a cross-sectional approach, 500 orally treated patients with type 2 diabetes (272 women, 238 men; mean +/- SD age, 64.8 +/- 11.6 years; hemoglobin A1c, 7.0 +/- 1.5%; disease duration, 5.8 +/- 6.1 years) were investigated. Various cutoffs for body mass index-adjusted adiponectin and proinsulin/adiponectin were compared with the established cutoff value of 10 pmol/L for fasting proinsulin. Fasting proinsulin correlated more closely with the HOMA score (r = 0.560, P < 0.001) than fasting adiponectin (r = -0.204, P < 0.001) or proinsulin/adiponectin (r = 0.355, P < 0.001). For proinsulin, specificity and sensitivity for insulin resistance in correlation to the HOMA score results were 96% and 70%, respectively. At a comparable specificity level to proinsulin, adiponectin did not reach a comparable sensitivity (14%), while the proinsulin/adiponectin ratio almost reached the same sensitivity (65%). Overall, patients with elevated proinsulin had a higher prevalence of micro- and macrovascular disease [odds ratio 1.47 (adiponectin, 1.08; proinsulin/ adiponectin, 1.48) and 1.34 (adiponectin, 1.32; proinsulin/adiponectin, 1.27), respectively]. Elevation of fasting intact proinsulin seems to be the more specific marker for insulin resistance and increased cardiovascular risk than suppression of fasting adiponectin. Formation of the ratio does not lead to a further increase in the predictive value.

Validity, sensitivity and specificity of the mentation, behavior and mood subscale of the UPDRS.

PubMed

Holroyd, Suzanne; Currie, Lillian J; Wooten, G Frederick

2008-06-01

The unified Parkinson's disease rating scale (UPDRS) is the most widely used tool to rate the severity and the stage of Parkinson's disease (PD). However, the mentation, behavior and mood (MBM) subscale of the UPDRS has received little investigation regarding its validity and sensitivity. Three items of this subscale were compared to criterion tests to examine validity, sensitivity and specificity. Ninety-seven patients with idiopathic PD were assessed on the UPDRS. Scores on three items of the MBM subscale, intellectual impairment, thought disorder and depression, were compared to criterion tests, the telephone interview for cognition status (TICS), psychiatric assessment for psychosis and the geriatric depression scale (GDS). Non-parametric tests of association were performed to examine concurrent validity of the MBM items. The sensitivities, specificities and optimal cutoff scores for each MBM item were estimated by receiver operating characteristic (ROC) curve analysis. The MBM items demonstrated low to moderate correlation with the criterion tests, and the sensitivity and specificity were not strong. Even using a score of 7.0 on the items of the MBM demonstrated a sensitivity/specificity of only 0.19/0.48 for intellectual impairment, 0.60/0.72 for thought disorder and 0.61/0.87 for depression. Using a more appropriate cutoff of 2.0 revealed sensitivities of 0.01, 0.38 and 0.13 respectively. The MBM subscale items of intellectual impairment, thought disorder and depression are not appropriate for screening or diagnostic purposes. Tools such as the TICS and the GDS should be considered instead.

Evaluation of the Intermittent Exotropia Questionnaire using Rasch analysis.

PubMed

Leske, David A; Holmes, Jonathan M; Melia, B Michele

2015-04-01

The Intermittent Exotropia Questionnaire (IXTQ) is a patient, proxy, and parental report of quality of life specific to children with intermittent exotropia. We refine the IXTQ using Rasch analysis to improve reliability and validity. Rasch analysis was performed on responses of 575 patients with intermittent exotropia enrolled from May 15, 2008, through July 24, 2013, and their parents from each of the 4 IXTQ health-related quality-of-life questionnaires (child 5 through 7 years of age and child 8 through 17 years of age, proxy, and parent questionnaires). Questionnaire performance and structure were confirmed in a separate cohort of 379 patients with intermittent exotropia. One item was removed from the 12-item child and proxy questionnaires, and response options in the 8- to 17-year-old child IXTQ and proxy IXTQ were combined into 3 response options for both questionnaires. Targeting was relatively poor for the child and proxy questionnaires. For the parent questionnaire, 3 subscales (psychosocial, function, and surgery) were evident. One item was removed from the psychosocial subscale. Resulting subscales had appropriate targeting. The Rasch-revised IXTQ may be a useful instrument for determining how intermittent exotropia affects health-related quality of life of children with intermittent exotropia and their parents, particularly for cohort studies.

Evaluation of an inflammation-based prognostic score in patients with inoperable gastro-oesophageal cancer.

PubMed

Crumley, A B C; McMillan, D C; McKernan, M; McDonald, A C; Stuart, R C

2006-03-13

There is increasing evidence that the presence of an ongoing systemic inflammatory response is associated with poor outcome in patients with advanced cancer. The aim of the present study was to examine whether an inflammation-based prognostic score (Glasgow Prognostic score, GPS) was associated with survival, in patients with inoperable gastro-oesophageal cancer. Patients diagnosed with inoperable gastro-oesophageal carcinoma and who had measurement of albumin and C-reactive protein concentrations, at the time of diagnosis, were studied (n=258). Clinical information was obtained from a gastro-oesophageal cancer database and analysis of the case notes. Patients with both an elevated C-reactive protein (>10 mg l(-1)) and hypoalbuminaemia (<35 g l(-1)) were allocated a GPS score of 2. Patients in whom only one of these biochemical abnormalities was present were allocated a GPS score of 1, and patients with a normal C-reactive protein and albumin were allocated a score of 0. On multivariate survival analysis, age (hazard ratio (HR) 1.22, 95% CI 1.02-1.46, P<0.05), stage (HR 1.55, 95% CI 1.30-1.83, P<0.001), the GPS (HR 1.51, 95% CI 1.22-1.86, P<0.001) and treatment (HR 2.53, 95% CI 1.80-3.56, P<0.001) were significant independent predictors of cancer survival. A 12-month cancer-specific survival in patients with stage I/II disease receiving active treatment was 67 and 60% for a GPS of 0 and 1, respectively. For stage III/IV disease, 12 months cancer-specific survival was 57, 25 and 12% for a GPS of 0, 1 and 2, respectively. In the present study, the GPS predicted cancer-specific survival, independent of stage and treatment received, in patients with inoperable gastro-oesophageal cancer. Moreover, the GPS may be used in combination with conventional staging techniques to improve the prediction of survival in patients with inoperable gastro-oesophageal cancer.

Breast-cancer-specific mortality in patients treated based on the 21-gene assay: a SEER population-based study.

PubMed

Petkov, Valentina I; Miller, Dave P; Howlader, Nadia; Gliner, Nathan; Howe, Will; Schussler, Nicola; Cronin, Kathleen; Baehner, Frederick L; Cress, Rosemary; Deapen, Dennis; Glaser, Sally L; Hernandez, Brenda Y; Lynch, Charles F; Mueller, Lloyd; Schwartz, Ann G; Schwartz, Stephen M; Stroup, Antoinette; Sweeney, Carol; Tucker, Thomas C; Ward, Kevin C; Wiggins, Charles; Wu, Xiao-Cheng; Penberthy, Lynne; Shak, Steven

2016-01-01

The 21-gene Recurrence Score assay is validated to predict recurrence risk and chemotherapy benefit in hormone-receptor-positive (HR+) invasive breast cancer. To determine prospective breast-cancer-specific mortality (BCSM) outcomes by baseline Recurrence Score results and clinical covariates, the National Cancer Institute collaborated with Genomic Health and 14 population-based registries in the the Surveillance, Epidemiology, and End Results (SEER) Program to electronically supplement cancer surveillance data with Recurrence Score results. The prespecified primary analysis cohort was 40-84 years of age, and had node-negative, HR+, HER2-negative, nonmetastatic disease diagnosed between January 2004 and December 2011 in the entire SEER population, and Recurrence Score results ( N =38,568). Unadjusted 5-year BCSM were 0.4% ( n =21,023; 95% confidence interval (CI), 0.3-0.6%), 1.4% ( n =14,494; 95% CI, 1.1-1.7%), and 4.4% ( n =3,051; 95% CI, 3.4-5.6%) for Recurrence Score <18, 18-30, and ⩾31 groups, respectively ( P <0.001). In multivariable analysis adjusted for age, tumor size, grade, and race, the Recurrence Score result predicted BCSM ( P <0.001). Among patients with node-positive disease (micrometastases and up to three positive nodes; N =4,691), 5-year BCSM (unadjusted) was 1.0% ( n =2,694; 95% CI, 0.5-2.0%), 2.3% ( n =1,669; 95% CI, 1.3-4.1%), and 14.3% ( n =328; 95% CI, 8.4-23.8%) for Recurrence Score <18, 18-30, ⩾31 groups, respectively ( P <0.001). Five-year BCSM by Recurrence Score group are reported for important patient subgroups, including age, race, tumor size, grade, and socioeconomic status. This SEER study represents the largest report of prospective BCSM outcomes based on Recurrence Score results for patients with HR+, HER2-negative, node-negative, or node-positive breast cancer, including subgroups often under-represented in clinical trials.

Paid to Perform: Aligning Total Military Compensation With Talent Management. Volume 8

DTIC Science & Technology

2015-06-01

matriculates roughly 50 percent of all officers selected for promotion to O-4 (the remainder taking the course via satellite school /distance learning mod...industrial-era personnel as- sembly line: an 0-4 promotion board and a resident 11 30+ 12 Command and General Staff School (CGSS) board. Both are...analytical ability , mathematical intelligence, etc.). 23 Figure 6. Separating Equilibrium (with Army Officer SAT Scores as Talent Proxy). As Figure 6

The contribution of clinical assessments to the diagnostic algorithm of pulmonary embolism.

PubMed

Turan, Onur; Turgut, Deniz; Gunay, Turkan; Yilmaz, Erkan; Turan, Ayse; Akkoclu, Atila

2017-01-01

Pulmonary thromboembolism (PE) is a major disease in respiratory emergencies. Thoracic CT angiography (CTA) is an important method of visualizing PE. Because of the high radiation and contrast exposure, the method should be performed selectively in patients in whom PE is suspected. The aim of the study was to identify the role of clinical scoring systems utilizing CTA results to diagnose PE. The study investigated 196 patients referred to the hospital emergency service in whom PE was suspected and CTA performed. They were evaluated by empirical, Wells, Geneva and Miniati assessments and classified as low, intermediate and high clinical probability. They were also classified according to serum D-dimer levels. The sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV) were calculated and evaluated according to CTA findings. Empirical scoring was found to have the highest sensitivity, while the Wells system had the highest specificity. When low D-dimer levels and "low probabilty" were evaluated together for each scoring system, the sensitivity was found to be 100% for all methods. Wells scoring with a cut-off score of 4 had the highest specificity (56.1%). Clinical scoring systems may be guides for patients in whom PE is suspected in the emergency department. The empirical and Wells scoring systems are effective methods for patient selection. Adding evaluation of D-dimer serum levels to the clinical scores could identify patients in whom CTA should be performed. Since CTA can only be used conservatively, the use of clinical scoring systems in conjunction with D-dimer levels can be a useful guide for patient selection.

Infection and childhood leukemia: review of evidence

PubMed Central

Maia, Raquel da Rocha Paiva; Wünsch, Victor

2013-01-01

OBJECTIVE To analyze studies that evaluated the role of infections as well as indirect measures of exposure to infection in the risk of childhood leukemia, particularly acute lymphoblastic leukemia. METHODS A search in Medline, Lilacs, and SciELO scientific publication databases initially using the descriptors "childhood leukemia" and "infection" and later searching for the words "childhood leukemia" and "maternal infection or disease" or "breastfeeding" or "daycare attendance" or "vaccination" resulted in 62 publications that met the following inclusion criteria: subject aged ≤ 15 years; specific analysis of cases diagnosed with acute lymphoblastic leukemia or total leukemia; exposure assessment of mothers' or infants' to infections (or proxy of infection), and risk of leukemia. RESULTS Overall, 23 studies that assessed infections in children support the hypothesis that occurrence of infection during early childhood reduces the risk of leukemia, but there are disagreements within and between studies. The evaluation of exposure to infection by indirect measures showed evidence of reduced risk of leukemia associated mainly with daycare attendance. More than 50.0% of the 16 studies that assessed maternal exposure to infection observed increased risk of leukemia associated with episodes of influenza, pneumonia, chickenpox, herpes zoster, lower genital tract infection, skin disease, sexually transmitted diseases, Epstein-Barr virus, and Helicobacter pylori. CONCLUSIONS Although no specific infectious agent has been identified, scientific evidence suggests that exposure to infections has some effect on childhood leukemia etiology. PMID:24626555

18F-FDG PET brain images as features for Alzheimer classification

NASA Astrophysics Data System (ADS)

Azmi, M. H.; Saripan, M. I.; Nordin, A. J.; Ahmad Saad, F. F.; Abdul Aziz, S. A.; Wan Adnan, W. A.

2017-08-01

2-Deoxy-2-[fluorine-18] fluoro-D-glucose (18F-FDG) Positron Emission Tomography (PET) imaging offers meaningful information for various types of diseases diagnosis. In Alzheimer's disease (AD), the hypometabolism of glucose which observed on the low intensity voxel in PET image may relate to the onset of the disease. The importance of early detection of AD is inevitable because the resultant brain damage is irreversible. Several statistical analysis and machine learning algorithm have been proposed to investigate the rate and the pattern of the hypometabolism. This study focus on the same aim with further investigation was performed on several hypometabolism pattern. Some pre-processing steps were implemented to standardize the data in order to minimize the effect of resolution and anatomical differences. The features used are the mean voxel intensity within the AD pattern mask, which derived from several z-score and FDR threshold values. The global mean voxel (GMV) and slice-based mean voxel (SbMV) intensity were observed and used as input to the neural network. Several neural network architectures were tested and compared to the nearest neighbour method. The highest accuracy equals to 0.9 and recorded at z-score ≤-1.3 with 1 node neural network architecture (sensitivity=0.81 and specificity=0.95) and at z-score ≤-0.7 with 10 nodes neural network (sensitivity=0.83 and specificity=0.94).

Improving Assessments of Chlorophyll Concentration From In Situ Optical Measurements

NASA Astrophysics Data System (ADS)

Nardelli, S.; Twardowski, M.

2016-02-01

Florescence as a chlorophyll proxy has poor accuracy because it is dependent on specific absorption (effective molar absorptivity of packaged chlorophyll in living cells) and fluorescence quantum yield, both of which are highly variable. Absorption is a better proxy, as it is only dependent on specific absorption for packaged chlorophyll, although excepted accuracy in using a nominal specific absorption for all phytoplankton is still about 50%. Bricaud et al. (1995), Ciotti et al. (2002), Mouw et al. (2010), etc. have shown, however, that specific absorption is closely related to the average size of phytoplankton due to the relative packaging effect. Through other methods that have been developed over the years (Morel 1973; Diehl and Haart 1980; Boss et al. 2001; Slade and Boss 2015), it has been shown that measurements of spectral particulate attenuation (i.e., light transmission), and perhaps spectral particulate backscattering, can be used as simple proxies for the average size of the particle field. We therefore test the hypothesis that information on average particle size may be used to better estimate specific absorption for packaged chlorophyll, possibly enabling more accurate retrievals of chlorophyll concentration from optical measurements. The required optical measurements can be made with compact commercial off-the-shelf sensors with high sampling frequency that can be operated from autonomous vehicles; as a result, derived chlorophyll concentration could be resolved at far higher temporal and spatial frequency than is currently possible through extracting chlorophyll from discretely collected samples. This study examines the relationship between specific absorption and the attenuation spectral slope in extensive datasets from Case I and Case II waters found globally in an attempt to assess the link between pigment packaging and phytoplankton size dynamics and the impact on improving the derivation of chlorophyll from in situ optical measurements.

Six years beyond pediatric trauma: child and parental ratings of children's health-related quality of life in relation to parental mental health.

PubMed

Sluys, Kerstin Prignitz; Lannge, Margaretha; Iselius, Lennart; Eriksson, Lars E

2015-11-01

To examine the relationship between child self-report and parent proxy report of health-related quality of life (HRQL) and how parents' mental health status relates to the HRQL ratings 6 years after minor to severe injury of the child. This cross-sectional cohort study was performed at a regional pediatric trauma center in Stockholm, Sweden. The PedsQL 4.0 versions for ages 5-7, 8-12, and 13-18 years were completed by 177 child-parent dyads 6 years after injury to the child. The parents also rated their own mental health through the mental health domain (MH) in the SF-36 Health Survey. The children's median age was 13 years (IQR 10-16 years), 54 % were males, and the median ISS was 5 (IQR 2-9). Most of the parents were female (77 %), born in Sweden (79 %), and half had university degrees. There was no statistically significant difference between child self-report and parent proxy report in any of the PedsQL 4.0 scales or summary scales. The levels of agreement between child self-report and parent proxy reports were excellent (ICC ≥ 0.80) for all scales with the exception of emotional functioning (ICC 0.53) which also was the scale with the lowest internal consistency in child self-report (α 0.60). Multiple regression analyses showed that worse parental mental health status correlated with worse child self-report and parent proxy report of children's HRQL. Children and their parents' reports on child's HRQL were in agreement. Decreased mental health in parents was associated with lower scores on parent proxy reports and child self-reports of HRQL after injury. The current investigation highlights the possible relationship between parent's mental health status and children's HRQL long after an injury, which should be considered in future investigations and in clinical care.

Vision impairment and major causes of vision loss impacts on vision-specific functioning independent of socioeconomic factors.

PubMed

Chiang, Peggy P C; Zheng, Yingfeng; Wong, Tien Y; Lamoureux, Ecosse L

2013-02-01

To quantify the eye disease-specific impact of unilateral and bilateral vision impairment (VI) on vision-specific functioning (VF). The Singapore Indian Eye population-based study. Ethnic Indians older than 40 years of age living in Singapore. Participants underwent standardized ophthalmic assessments for VI and blindness, defined using presenting visual acuity (United States definition). Sociodemographic data were recorded using a standardized questionnaire. Rasch analysis was used to validate the Visual Function Index 11 and to determine its psychometric properties. The major causes of VI (i.e., cataract, refractive error, age-related macular degeneration, diabetic retinopathy [DR], and glaucoma) were determined by ophthalmologists on examination. Multivariate linear regression analysis was performed to assess the impact of VI on the overall VF Rasch score. Vision-specific functioning. Three thousand three hundred ninety-six persons were analyzed. Participants with VI had a systematic reduction in VF score compared with those with normal vision in both eyes, ranging from -11.2% normal vision in one eye and low vision in the other eye (95% confidence interval [CI], -12.2% to -10.3%; P<0.001), to -12.7% blindness in one eye and normal vision in the other eye (CI, -15.1% to -10.4%; P<0.001), to -19.4% low vision in both eyes (CI, -20.8% to -18.1%; P<0.001), to -52.9% blindness in one eye and low vision in other eye (CI, -55.3% to -50.4%; P<0.001), to -77.2% blindness in both eyes (CI, -82.4% to 72.0%; P<0.001). The impact of VI on VF score varied across different major causes of vision loss, regardless of socioeconomic factors. Vision impairment attributed to cataract in one or both eyes had a significant decrease in VF score by 17.7% and 22.3%, respectively, compared with those with normal vision in both eyes (P<0.001). The impact of unilateral and bilateral VI on VF score was greater in participants with glaucoma (32.2% in unilateral cases and 35.9% in bilateral cases; P<0.001) and DR (29.4% in unilateral cases and 33.3% in bilateral cases; P<0.001). Vision impairment and major age-related eye diseases such as cataract, DR, and glaucoma are associated significantly with worse deterioration in VF, regardless of education level, literacy adequacy, or immigration pattern. Glaucoma and DR seemed to have a greater negative impact on VF score compared with cataract. This study highlights the importance of disease-specific interventions in reducing the adverse impact of VI on daily activities. Copyright © 2013 American Academy of Ophthalmology. Published by Elsevier Inc. All rights reserved.

Disease-specific quality of life after septoplasty and bilateral inferior turbinate outfracture in patients with nasal obstruction.

PubMed

Resende, Lucas; Carmo, Carolina do; Mocellin, Leão; Pasinato, Rogério; Mocellin, Marcos

2017-07-29

Septal deviations might cause nasal obstruction and negative impact on the quality of life of individuals. The efficacy of septoplasty for treatment of septal deviation and the predictors of satisfactory surgical outcomes remain controversial. Technical variability, heterogeneity of research samples and absence of a solid tool for clinical evaluation are the main hindrances to the establishment of reliable statistical data regarding the procedure. To evaluate the clinical improvements in the disease-specific quality-of-life between patients submitted to septoplasty with bilateral outfracture of the inferior turbinate under sedation and local anesthesia in a tertiary hospital and to assess possible clinical-epidemiological variables associated with functional outcome. Fifty-two patients consecutively submitted to septoplasty with bilateral outfracture of the inferior turbinate for treatment of nasal obstruction filled in forms regarding clinical and epidemiological information during enrollment and had their symptom objectively quantified using the Nose Obstruction Symptom Evaluation (NOSE) scale preoperatively and one and three months after the procedure. Statistical analysis aimed to determine overall and stratified surgical outcomes and to investigate correlations between the clinical-epidemiological variables with the scores obtained. Statistically significant improvement in the preoperative NOSE questionnaire compared to the scores obtained three months after surgery was demonstrated (p<0.001, T-Wilcoxon), with strong correlation between the preoperative score and the postoperative improvement during this period (r=-0.614, p<0.001, Spearman). After one month, patients reached in average 87.15% of the result obtained at the study termination. Smokers and patients with rhinitis and/or pulmonary comorbidity showed increased average preoperative NOSE scores, although without statistical significance (p>0.05). Gender, age, history of rhinitis and presence of pulmonary comorbidity did not influence significantly surgical outcomes (p>0.05). Smokers presented greater reduction in NOSE scores during the study (p=0.043, U-Mann-Whitney). Septoplasty with bilateral outfracture of the inferior turbinate has proven to significantly improve disease-specific quality-of-life and this favorable outcome seems to occur precociously. Copyright © 2017 Associação Brasileira de Otorrinolaringologia e Cirurgia Cérvico-Facial. Published by Elsevier Editora Ltda. All rights reserved.

Simulating the Incorporation of Geochemical Proxies into Scleractinian Coral Skeletons: Effects of Different Environmental and Biological Factors and Implications for Paleo-reconstruction

NASA Astrophysics Data System (ADS)

Guo, W.

2017-12-01

Chemical and isotopic compositions of scleractinian coral skeletons reflect the physicochemical condition of the seawater in which corals grow. This makes coral skeleton one of the best archives of ocean climate and biogeochemical changes. A number of coral-based geochemical proxies have been developed and applied to reconstruct past seawater conditions, such as temperature, pH, carbonate chemistry and nutrient concentrations. Detailed laboratory and field-based studies of these proxies, however, indicate interpretation of the geochemistry of coral skeletons is not straightforward, due to the presence of `vital effects' and the variations of empirical proxy calibrations among and within different species. This poses challenges for the broad application of many geochemical proxies in corals, and highlights the need to better understand the fundamental processes governing the incorporation of different proxies. Here I present a numerical model that simulates the incorporation of a suite of geochemical proxies into coral skeletons, including δ11B, Mg/Ca, Sr/Ca, U/Ca, B/Ca and Ba/Ca. This model, building on previous theoretical studies of coral calcification, combines our current understanding of coral calcification mechanism with experimental constraints on the isotope and element partition during carbonate precipitation. It enables quantitative evaluation of the effects of different environmental and biological factors on each proxy. Specifically, this model shows that (1) the incorporation of every proxy is affected by multiple seawater parameters (e.g. temperature, pH, DIC) as opposed to one single parameter, and (2) biological factors, particularly the interplay between enzymatic alkalinity pumping and the exchange of coral calcifying fluid with external seawater, also exert significant controls. Based on these findings, I propose an inverse method for simultaneously reconstructing multiple seawater physicochemical parameters, and compare the performance of this new method with conventional paleo-reconstruction methods that are based on empirical calibrations. In addition, the extension of this model to simulate carbon, oxygen and clumped isotope (δ13C, δ18O, Δ47) composition of coral skeletons will also be discussed at the meeting.

Mechanistic controls on diverse fates of terrestrial organic components in the East China Sea

NASA Astrophysics Data System (ADS)

Zhu, Chun; Wagner, Thomas; Talbot, Helen M.; Weijers, Johan W. H.; Pan, Jian-Ming; Pancost, Richard D.

2013-09-01

Terrestrial carbon transferred from the land to sea is a critical component of the global carbon cycle. A range of geochemical proxies has been developed to fingerprint the fate of terrestrial organic matter (TOM) in marine sediments. However, discrepancies among different proxies limit our ability to quantify and interpret the terrestrial signals in marine sediments, with consequences for the investigation of both the modern carbon cycle and past environmental change. To mechanistically understand these discrepancies, we examined the distributions of a range of terrestrial proxies and their aquatic counterparts (i.e. marine proxies) in the Yangtze river-East China Sea (YR-ECS) shelf system, where TOM experiences extensive modification during transport and burial. TOM proxies in the YR-ECS system collectively fit a power-law model but with distinct attenuation rates (the a∗ values) for individual molecular proxy groups. Among a range of TOM proxies, the modeled a∗ values decrease in the order: soil-marker BHPs > triterpenols > lignin > HMW n-alkanols > branched GDGTs > HMW n-alkanes for biomarkers; and Rsoil > BIT > %TOMiso for proxies tracing %TOM. Rapid loss of TOM components through dissociation in the narrow estuary, followed by oxidation over the wide open shelf, are best described by power curves. Inherent chemical reactivity (i.e. the number of functional groups), responses to hydraulic sorting, and in situ production regulate the individual attenuation rates. Of them, chemical reactivity plays the most important role on proxy behavior, supported by a strong correlation between a∗ values and standard molal Gibbs energies. Both, physical protection and chemical reactivity fundamentally control the overall behavior of TOM components, with the relative importance being setting-dependant: The former is relatively important in the estuary, whereas the later is the primary control over the open shelf. Moreover, regional variation of different marine-counterparts is also significant over the river-ECS shelf system, seemingly regulated by regional nutrient distributions. Therefore, for %TOM estimates using molecular ratio approaches, the specific behavior of individual terrestrial components and marine-counterparts and the physical, biological and chemical characteristics of depositional settings all need to be considered.

Assessing the spatial representability of charcoal and PAH-based paleofire records with integrated GIS, modelling, and empirical approaches

NASA Astrophysics Data System (ADS)

Vachula, R. S.; Huang, Y.; Russell, J. M.

2017-12-01

Lake sediment-based fire reconstructions offer paleoenvironmental context in which to assess modern fires and predict future burning. However, despite the ubiquity, many uncertainties remain regarding the taphonomy of paleofire proxies and the spatial scales for which they record variations in fire history. Here we present down-core proxy analyses of polycyclic aromatic hydrocarbons (PAHs) and three size-fractions of charcoal (63-150, >150 and >250 μm) from Swamp Lake, California, an annually laminated lacustrine archive. Using a statewide historical GIS dataset of area burned, we assess the spatial scales for which these proxies are reliable recorders of fire history. We find that the coherence of observed and proxy-recorded fire history inherently depends upon spatial scale. Contrary to conventional thinking that charcoal mainly records local fires, our results indicate that macroscopic charcoal (>150 μm) may record spatially broader (<25 km) changes in fire history, and as such, the coarsest charcoal particles (>250 μm) may be a more conservative proxy for local burning. We find that sub-macroscopic charcoal particles (63-150 μm) reliably record regional (up to 150 km) changes in fire history. These results indicate that charcoal-based fire reconstructions may represent spatially broader fire history than previously thought, which has major implications for our understanding of spatiotemporal paleofire variations. Our analyses of PAHs show that dispersal mobility is heterogeneous between compounds, but that PAH fluxes are reliable proxies of fire history within 25-50 km, which suggests PAHs may be a better spatially constrained paleofire proxy than sedimentary charcoal. Further, using a linear discriminant analysis model informed by modern emissions analyses, we show that PAH assemblages preserved in lake sediments can differentiate vegetation type burned, and are thus promising paleoecological biomarkers warranting further research and implementation. In sum, our analyses offer new insight into the spatial dimensions of paleofire proxies and constitute a methodology that can be applied to other locations and proxies to better inform site-specific reconstructions.

Design and rationale of the WELCOME trial: A randomised, placebo controlled study to test the efficacy of purified long chainomega-3 fatty acid treatment in non-alcoholic fatty liver disease [corrected].

PubMed

Scorletti, E; Bhatia, L; McCormick, K G; Clough, G F; Nash, K; Calder, P C; Byrne, C D

2014-03-01

Non-alcoholic fatty liver disease (NAFLD) represents a range of liver conditions from simple fatty liver to progressive end stage liver disease requiring liver transplantation. NAFLD is common in the population and in certain sub groups (e.g. type 2 diabetes) up to 70% of patients may be affected. NAFLD is not only a cause of end stage liver disease and hepatocellular carcinoma, but is also an independent risk factor for type 2 diabetes and cardiovascular disease. Consequently, effective treatments for NAFLD are urgently needed. The WELCOME study is testing the hypothesis that treatment with high dose purified long chain omega-3 fatty acids will have a beneficial effect on a) liver fat percentage and b) two histologically validated algorithmically-derived biomarker scores for liver fibrosis. In a randomised double blind placebo controlled trial, 103 participants with NAFLD were randomised to 15-18months treatment with either 4g/day purified long chain omega-3 fatty acids (Omacor) or 4g/day olive oil as placebo. Erythrocyte percentage DHA and EPA enrichment (a validated proxy for hepatic enrichment) was determined by gas chromatography. Liver fat percentage was measured in three discrete liver zones by magnetic resonance spectroscopy (MRS). We also measured body fat distribution, physical activity and a range of cardiometabolic risk factors. Recruitment started in January 2010 and ended in June 2011. We identified 178 potential participants, and randomised 103 participants who met the inclusion criteria. The WELCOME study was approved by the local ethics committee (REC: 08/H0502/165; www.clinicalTrials.gov registration number NCT00760513). Copyright © 2014 Elsevier Inc. All rights reserved.

Comparing the Scoring of Human Decomposition from Digital Images to Scoring Using On-site Observations.

PubMed

Dabbs, Gretchen R; Bytheway, Joan A; Connor, Melissa

2017-09-01

When in forensic casework or empirical research in-person assessment of human decomposition is not possible, the sensible substitution is color photographic images. To date, no research has confirmed the utility of color photographic images as a proxy for in situ observation of the level of decomposition. Sixteen observers scored photographs of 13 human cadavers in varying decomposition stages (PMI 2-186 days) using the Total Body Score system (total n = 929 observations). The on-site TBS was compared with recorded observations from digital color images using a paired samples t-test. The average difference between on-site and photographic observations was -0.20 (t = -1.679, df = 928, p = 0.094). Individually, only two observers, both students with <1 year of experience, demonstrated TBS statistically significantly different than the on-site value, suggesting that with experience, observations of human decomposition based on digital images can be substituted for assessments based on observation of the corpse in situ, when necessary. © 2017 American Academy of Forensic Sciences.

Can We Train Machine Learning Methods to Outperform the High-dimensional Propensity Score Algorithm?

PubMed

Karim, Mohammad Ehsanul; Pang, Menglan; Platt, Robert W

2018-03-01

The use of retrospective health care claims datasets is frequently criticized for the lack of complete information on potential confounders. Utilizing patient's health status-related information from claims datasets as surrogates or proxies for mismeasured and unobserved confounders, the high-dimensional propensity score algorithm enables us to reduce bias. Using a previously published cohort study of postmyocardial infarction statin use (1998-2012), we compare the performance of the algorithm with a number of popular machine learning approaches for confounder selection in high-dimensional covariate spaces: random forest, least absolute shrinkage and selection operator, and elastic net. Our results suggest that, when the data analysis is done with epidemiologic principles in mind, machine learning methods perform as well as the high-dimensional propensity score algorithm. Using a plasmode framework that mimicked the empirical data, we also showed that a hybrid of machine learning and high-dimensional propensity score algorithms generally perform slightly better than both in terms of mean squared error, when a bias-based analysis is used.

Specific immunotherapy ameliorates ulcerative colitis.

PubMed

Cai, Min; Zeng, Lu; Li, Lin-Jing; Mo, Li-Hua; Xie, Rui-Di; Feng, Bai-Sui; Zheng, Peng-Yuan; Liu, Zhi-Gang; Liu, Zhan-Ju; Yang, Ping-Chang

2016-01-01

Hypersensitivity reaction to certain allergens plays a role in the pathogenesis of inflammatory bowel disease (IBD). This study aims to observe the effect of specific immunotherapy in a group of IBD patients. Patients with both ulcerative colitis (UC) and food allergy were recruited into this study. Food allergy was diagnosed by skin prick test and serum specific IgE. The patients were treated with specific immunotherapy (SIT) and Clostridium butyricum (CB) capsules. After treating with SIT and CB, the clinical symptoms of UC were markedly suppressed as shown by reduced truncated Mayo scores and medication scores. The serum levels of specific IgE, interleukin (IL)-4 and tumor necrosis factor (TNF)-α were also suppressed. Treating with SIT alone or CB alone did not show appreciable improvement of the clinical symptoms of UC. UC with food allergy can be ameliorated by administration with SIT and butyrate-production probiotics.

Predictors of health-related quality of life in children with chronic heart disease.

PubMed

Niemitz, Mandy; Gunst, Diana C M; Hövels-Gürich, Hedwig H; Hofbeck, Michael; Kaulitz, Renate; Galm, Christoph; Berger, Felix; Nagdyman, Nicole; Stiller, Brigitte; Borth-Bruhns, Thomas; Konzag, Ines; Balmer, Christian; Goldbeck, Lutz

2017-10-01

Chronic paediatric heart disease is often associated with residual symptoms, persisting functional restrictions, and late sequelae for psychosocial development. It is, therefore, increasingly important to evaluate the health-related quality of life of children and adolescents with chronic heart disease. The aim of this study was to determine medical and socio-demographic variables affecting health-related quality of life in school-aged children and adolescents with chronic heart disease. Patients and methods The Pediatric Cardiac Quality of Life Inventory was administered to 375 children and adolescents and 386 parental caregivers. Medical information was obtained from the charts. The socio-demographic information was provided by the patients and caregivers. Greater disease severity, low school attendance, current cardiac medication, current parental employment, uncertain or limited prognosis, history of connection to a heart-lung machine, number of nights spent in a hospital, and need for treatment in a paediatric aftercare clinic independently contributed to lower health-related quality of life (self-report: R2=0.41; proxy-report: R2=0.46). High correlations between self-reports and parent-proxy reports indicated concordance regarding the evaluation of a child's health-related quality of life. Beyond medical treatment, integration into school is important to increase health-related quality of life in children and adolescents surviving with chronic heart disease. Regular screening of health-related quality of life is recommended to identify patients with special needs.

Prediction of Nonalcoholic Fatty Liver Disease Via a Novel Panel of Serum Adipokines

PubMed Central

Jamali, Raika; Arj, Abbas; Razavizade, Mohsen; Aarabi, Mohammad Hossein

2016-01-01

Abstract Considering limitations of liver biopsy for diagnosis of nonalcoholic liver disease (NAFLD), biomarkers’ panels were proposed. The aims of this study were to establish models based on serum adipokines for discriminating NAFLD from healthy individuals and nonalcoholic steatohepatitis (NASH) from simple steatosis. This case-control study was conducted in patients with persistent elevated serum aminotransferase levels and fatty liver on ultrasound. Individuals with evidence of alcohol consumption, hepatotoxic medication, viral hepatitis, and known liver disease were excluded. Liver biopsy was performed in the remaining patients to distinguish NAFLD/NASH. Histologic findings were interpreted using “nonalcoholic fatty liver activity score.” Control group consisted of healthy volunteers with normal physical examination, liver function tests, and liver ultrasound. Binary logistic regression analysis was applied to ascertain the effects of independent variables on the likelihood that participants have NAFLD/NASH. Decreased serum adiponectin and elevated serum visfatin, IL-6, TNF-a were associated with an increased likelihood of exhibiting NAFLD. NAFLD discriminant score was developed as the following: [(−0.298 × adiponectin) + (0.022 × TNF-a) + (1.021 × Log visfatin) + (0.709 × Log IL-6) + 1.154]. In NAFLD discriminant score, 86.4% of original grouped cases were correctly classified. Discriminant score threshold value of (−0.29) yielded a sensitivity and specificity of 91% and 83% respectively, for discriminating NAFLD from healthy controls. Decreased serum adiponectin and elevated serum visfatin, IL-8, TNF-a were correlated with an increased probability of NASH. NASH discriminant score was proposed as the following: [(−0.091 × adiponectin) + (0.044 × TNF-a) + (1.017 × Log visfatin) + (0.028 × Log IL-8) − 1.787] In NASH model, 84% of original cases were correctly classified. Discriminant score threshold value of (−0.22) yielded a sensitivity and specificity of 90% and 66% respectively, for separating NASH from simple steatosis. New discriminant scores were introduced for differentiating NAFLD/NASH patients with a high accuracy. If verified by future studies, application of suggested models for screening of NAFLD/NASH seems reasonable. PMID:26844476

Sensitivity and specificity of the Gastrointestinal Short Form Questionnaire in diagnosis of gastroesophageal reflux disease.

PubMed

Teruel Sánchez-Vegazo, Carlos; Faro Leal, Vicenta; Muriel García, Alfonso; Mañas Gallardo, Norberto

2016-04-01

Gastrointestinal Short Form Questionnaire (GSFQ) is a questionnaire for gastroesophageal reflux disease (GERD) diagnosis, with a version in Spanish language, not yet compared to an objective test. To establish GSFQ diagnostic performance against 24-hour pH monitoring carried out in two tertiary care hospitals. Consecutive adult patients with typical GERD symptoms (heartburn, regurgitation) referred for pH monitoring fulfilled the GSFQ (score range 0-30, proportional to probability of GERD). Diagnosis of GERD was established when acid exposure time in distal esophagus was superior to 4.5% or symptom association probability was greater than 95%. Receiver-operator characteristic (ROC) curves were calculated and best cut-off score determined, with corresponding sensitivity, specificity and likelihood ratios (LR) (95% confidence interval for each). One hundred and fifty-two patients were included (59.9% women, age 47.9 ± 13.9; 97.4% heartburn; 71.3% regurgitation). pH monitoring was abnormal in 65.8%. Mean GSFQ score was 11.2 ± 6. Area under ROC was 56.5% (47.0-65.9%). Optimal cut-off score was 13 or greater: sensitivity 40% (30.3-50.3%), specificity 71.2% (56.9-82.9%), positive LR 1.39 (0.85-2.26) and negative LR 0.84 (0.67-1.07). Exclusion of questions 1 and 3 of the original GSFQ, easily interpreted as referred to dyspepsia and not GERD, improved only marginally the diagnostic performance: AUROC 59.1%. The GSFQ does not predict results of pH monitoring in patients with typical symptoms in a tertiary care setting.

Paleolithic and Mediterranean Diet Pattern Scores Are Inversely Associated with All-Cause and Cause-Specific Mortality in Adults123

PubMed Central

Whalen, Kristine A; Judd, Suzanne; McCullough, Marjorie L; Flanders, W Dana; Hartman, Terryl J; Bostick, Roberd M

2017-01-01

Background: Poor diet quality is associated with a higher risk of many chronic diseases that are among the leading causes of death in the United States. It has been hypothesized that evolutionary discordance may account for some of the higher incidence and mortality from these diseases. Objective: We investigated associations of 2 diet pattern scores, the Paleolithic and the Mediterranean, with all-cause and cause-specific mortality in the REGARDS (REasons for Geographic and Racial Differences in Stroke) study, a longitudinal cohort of black and white men and women ≥45 y of age. Methods: Participants completed questionnaires, including a Block food-frequency questionnaire (FFQ), at baseline and were contacted every 6 mo to determine their health status. Of the analytic cohort (n = 21,423), a total of 2513 participants died during a median follow-up of 6.25 y. We created diet scores from FFQ responses and assessed their associations with mortality using multivariable Cox proportional hazards regression models adjusting for major risk factors. Results: For those in the highest relative to the lowest quintiles of the Paleolithic and Mediterranean diet scores, the multivariable adjusted HRs for all-cause mortality were, respectively, 0.77 (95% CI: 0.67, 0.89; P-trend < 0.01) and 0.63 (95% CI: 0.54, 0.73; P-trend < 0.01). The corresponding HRs for all-cancer mortality were 0.72 (95% CI: 0.55, 0.95; P-trend = 0.03) and 0.64 (95% CI: 0.48, 0.84; P-trend = 0.01), and for all-cardiovascular disease mortality they were 0.78 (95% CI: 0.61, 1.00; P-trend = 0.06) and HR: 0.68 (95% CI: 0.53, 0.88; P-trend = 0.01). Conclusions: Findings from this biracial prospective study suggest that diets closer to Paleolithic or Mediterranean diet patterns may be inversely associated with all-cause and cause-specific mortality. PMID:28179490

Paleolithic and Mediterranean Diet Pattern Scores Are Inversely Associated with All-Cause and Cause-Specific Mortality in Adults.

PubMed

Whalen, Kristine A; Judd, Suzanne; McCullough, Marjorie L; Flanders, W Dana; Hartman, Terryl J; Bostick, Roberd M

2017-04-01

Background: Poor diet quality is associated with a higher risk of many chronic diseases that are among the leading causes of death in the United States. It has been hypothesized that evolutionary discordance may account for some of the higher incidence and mortality from these diseases. Objective: We investigated associations of 2 diet pattern scores, the Paleolithic and the Mediterranean, with all-cause and cause-specific mortality in the REGARDS (REasons for Geographic and Racial Differences in Stroke) study, a longitudinal cohort of black and white men and women ≥45 y of age. Methods: Participants completed questionnaires, including a Block food-frequency questionnaire (FFQ), at baseline and were contacted every 6 mo to determine their health status. Of the analytic cohort ( n = 21,423), a total of 2513 participants died during a median follow-up of 6.25 y. We created diet scores from FFQ responses and assessed their associations with mortality using multivariable Cox proportional hazards regression models adjusting for major risk factors. Results: For those in the highest relative to the lowest quintiles of the Paleolithic and Mediterranean diet scores, the multivariable adjusted HRs for all-cause mortality were, respectively, 0.77 (95% CI: 0.67, 0.89; P- trend < 0.01) and 0.63 (95% CI: 0.54, 0.73; P- trend < 0.01). The corresponding HRs for all-cancer mortality were 0.72 (95% CI: 0.55, 0.95; P- trend = 0.03) and 0.64 (95% CI: 0.48, 0.84; P- trend = 0.01), and for all-cardiovascular disease mortality they were 0.78 (95% CI: 0.61, 1.00; P- trend = 0.06) and HR: 0.68 (95% CI: 0.53, 0.88; P- trend = 0.01). Conclusions: Findings from this biracial prospective study suggest that diets closer to Paleolithic or Mediterranean diet patterns may be inversely associated with all-cause and cause-specific mortality. © 2017 American Society for Nutrition.

Predictive Biomarkers for Linking Disease Pathology and Drug Effect.

PubMed

Mayer, Bernd; Heinzel, Andreas; Lukas, Arno; Perco, Paul

2017-01-01

Productivity in drug R&D continues seeing significant attrition in clinical stage testing. Approval of new molecular entities proceeds with slow pace specifically when it comes to chronic, age-related diseases, calling for new conceptual approaches, methodological implementation and organizational adoption in drug development. Detailed phenotyping of disease presentation together with comprehensive representation of drug mechanism of action is considered as a path forward, and a big data spectrum has become available covering behavioral, clinical and molecular characteristics, the latter combining reductionist and explorative strategies. On this basis integrative analytics in the realm of Systems Biology has emerged, essentially aiming at traversing associations into causal relationships for bridging molecular disease specifics and clinical phenotype surrogates and finally explaining drug response and outcome. From a conceptual perspective bottom-up modeling approaches are available, with dynamical hierarchies as formalism capable of describing clinical findings as emergent properties of an underlying molecular process network comprehensively resembling disease pathology. In such representation biomarker candidates serve as proxy of a molecular process set, at the interface of a corresponding representation of drug mechanism of action allowing patient stratification and prediction of drug response. In practical implementation network analytics on a protein coding gene level has provided a number of example cases for matching disease presentation and drug molecular effect, and workflows combining computational hypothesis generation and experimental evaluation have become available for systematically optimizing biomarker candidate selection. With biomarker-based enrichment strategies in adaptive clinical trials, implementation routes for tackling development attrition are provided. Predictive biomarkers add precision in drug development and as companion diagnostics in clinical practice. Copyright© Bentham Science Publishers; For any queries, please email at epub@benthamscience.org.

Privacy-Preserving Patient-Centric Clinical Decision Support System on Naïve Bayesian Classification.

PubMed

Liu, Ximeng; Lu, Rongxing; Ma, Jianfeng; Chen, Le; Qin, Baodong

2016-03-01

Clinical decision support system, which uses advanced data mining techniques to help clinician make proper decisions, has received considerable attention recently. The advantages of clinical decision support system include not only improving diagnosis accuracy but also reducing diagnosis time. Specifically, with large amounts of clinical data generated everyday, naïve Bayesian classification can be utilized to excavate valuable information to improve a clinical decision support system. Although the clinical decision support system is quite promising, the flourish of the system still faces many challenges including information security and privacy concerns. In this paper, we propose a new privacy-preserving patient-centric clinical decision support system, which helps clinician complementary to diagnose the risk of patients' disease in a privacy-preserving way. In the proposed system, the past patients' historical data are stored in cloud and can be used to train the naïve Bayesian classifier without leaking any individual patient medical data, and then the trained classifier can be applied to compute the disease risk for new coming patients and also allow these patients to retrieve the top- k disease names according to their own preferences. Specifically, to protect the privacy of past patients' historical data, a new cryptographic tool called additive homomorphic proxy aggregation scheme is designed. Moreover, to leverage the leakage of naïve Bayesian classifier, we introduce a privacy-preserving top- k disease names retrieval protocol in our system. Detailed privacy analysis ensures that patient's information is private and will not be leaked out during the disease diagnosis phase. In addition, performance evaluation via extensive simulations also demonstrates that our system can efficiently calculate patient's disease risk with high accuracy in a privacy-preserving way.