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Sample records for reported outcome questionnaires

  1. The OnyCOE-t™ questionnaire: responsiveness and clinical meaningfulness of a patient-reported outcomes questionnaire for toenail onychomycosis

    PubMed Central

    Potter, Lori P; Mathias, Susan D; Raut, Monika; Kianifard, Farid; Tavakkol, Amir

    2006-01-01

    Background This research was conducted to confirm the validity and reliability and to assess the responsiveness and clinical meaningfulness of the OnyCOE-t™, a questionnaire specifically designed to measure patient-reported outcomes (PRO) associated with toenail onychomycosis. Methods 504 patients with toenail onychomycosis randomized to receive 12 weeks of terbinafine 250 mg/day with or without target toenail debridement in the IRON-CLAD® trial completed the OnyCOE-t™ at baseline, weeks 6, 12, 24, and 48. The OnyCOE-t™ is composed of 6 multi-item scales and 1 single-item scale. These include a 7-item Toenail Symptom assessment, which comprises both Symptom Frequency and Symptom Bothersomeness scales; an 8-item Appearance Problems scale; a 7-item Physical Activities Problems scale; a 1-item Overall Problem scale; a 7-item Stigma scale; and a 3-item Treatment Satisfaction scale. In total, 33 toenail onychomycosis-specific items are included in the OnyCOE-t™. Clinical data, in particular the percent clearing of mycotic involvement in the target toenail, and OnyCOE-t™ responses were used to evaluate the questionnaire's reliability, validity, responsiveness, and the minimally clinical important difference (MCID). Results The OnyCOE-t™ was shown to be reliable and valid. Construct validity and known groups validity were acceptable. Internal consistency reliability of multi-item scales was demonstrated by Cronbach's alpha > .84. Responsiveness was good, with the Treatment Satisfaction, Symptom Frequency, Overall Problem, and Appearance Problem scales demonstrating the most responsiveness (Guyatt's statistic of 1.72, 1.31, 1.13, and 1.11, respectively). MCID was evaluated for three different clinical measures, and indicated that approximately an 8.5-point change (on a 0 to 100 scale) was clinically meaningful based on a 25% improvement in target nail clearing. Conclusion The OnyCOE-t™ questionnaire is a unique, toenail-specific PRO questionnaire that can be

  2. Patient reported outcome measures for cardiac ablation procedures: a multicentre pilot to develop a new questionnaire

    PubMed Central

    Withers, Kathleen L.; White, Judith; Carolan-Rees, Grace; Patrick, Hannah; O'Callaghan, Peter; Murray, Stephen; Cunningham, David; Wood, Kathryn A.; Lencioni, Mauro; Griffith, Michael

    2014-01-01

    Aim To assess the feasibility of administering Patient Reported Outcomes Measures (PROMs) in patients treated with ablation for cardiac arrhythmias, and to conduct the first stage of development and testing of a new PROM tool. Methods and results A new tool was developed by a multidisciplinary team and tested alongside an adaptation of the patient perception of arrhythmia questionnaire (PPAQ) and EQ-5D-5L in a multicentre retrospective audit involving 791 consecutive cardiac arrhythmia patients treated with catheter ablation at three UK centres over 13 months. Data were recorded in the National Cardiac Rhythm Management Database, part of the National Institute for Cardiovascular Outcomes Research. The response rate was 71.9% (n = 569). Patients reported significant improvements across all outcomes and impacts, with reductions in symptoms of 51.7% (heart racing), 33.9% (fatigue) 31.8% (heart flutters), 43.5% (dizziness), 38.6% (breathlessness), 44.2% (chest pressure), 33.1% (trouble concentrating), 15.9% (headache), 28.3% (neck pressure), and 23.4% (fainting) (P < 0.001). The mean number of social days affected reduced by 7.49 days/month (P < 0.001); mean work/school days affected/month reduced by 6.26 (P < 0.001); mean GP/hospital visits reduced by 1.36 days/month (P < 0.001). The procedure met patient expectations in 72% of responders. Conclusions The high response rate suggests that the use of PROMs in this patient group is feasible, with rates equalling those of the National PROMs Programme. The results showed that patients experienced significant improvements in their quality of life following ablation, while feedback allowed the tools to be improved. Further work is required to validate these tools; however, the findings suggest that PROMs could be useful in the audit of ablation techniques. PMID:24627541

  3. Towards Tailored Patient's Management Approach: Integrating the Modified 2010 ACR Criteria for Fibromyalgia in Multidimensional Patient Reported Outcome Measures Questionnaire

    PubMed Central

    El Miedany, Yasser; El Gaafary, Maha; Youssef, Sally; Ahmed, Ihab

    2016-01-01

    Objectives. To assess the validity, reliability, and responsiveness to change of a patient self-reported questionnaire combining the Widespread Pain Index and the Symptom Severity Score as well as construct outcome measures and comorbidities assessment in fibromyalgia patients. Methods. The PROMs-FM was conceptualized based on frameworks used by the WHO Quality of Life tool and the PROMIS. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction were achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented. The questionnaire included the modified ACR criteria main items (Symptom Severity Score and Widespread Pain Index), in addition to assessment of functional disability, quality of life (QoL), review of the systems, and comorbidities. Every patient completed HAQ and EQ-5D questionnaires. Results. A total of 146 fibromyalgia patients completed the questionnaire. The PROMs-FM questionnaire was reliable as demonstrated by a high standardized alpha (0.886–0.982). Content construct assessment of the functional disability and QoL revealed significant correlation (p < 0.01) with both HAQ and EQ-5D. Changes in functional disability and QoL showed significant (p < 0.01) variation with diseases activity status in response to therapy. There was higher prevalence of autonomic symptoms, CVS risk, sexual dysfunction, and falling. Conclusions. The developed PROMs-FM questionnaire is a reliable and valid instrument for assessment of fibromyalgia patients. A phased treatment regimen depending on the severity of FMS as well as preferences and comorbidities of the patient is the best approach to tailored patient management. PMID:27190648

  4. High Concordance between Self-Reported Adherence, Treatment Outcome and Satisfaction with Care Using a Nine-Item Health Questionnaire in InfCareHIV

    PubMed Central

    Marrone, Gaetano; Mellgren, Åsa; Eriksson, Lars E.; Svedhem, Veronica

    2016-01-01

    Background In this cross-sectional study we present an integrated analysis of a self-reported Health Questionnaire and socio-demographic and treatment outcome data from the national Swedish HIV cohort, InfCareHIV. Objectives To evaluate the Health Questionnaire and identify the main determinants of adherence. Methods A total of 2,846 patients answered a nine-item disease-specific Health Questionnaire between 2012 and 2014, corresponding to 44% of all active patients in the national InfCareHIV cohort. The questionnaire assessed patient related outcome measures (PROMs) regarding health and antiretroviral treatment (ART) and patient related experience measures (PREMs) regarding involvement in care and satisfaction with the care provider. Result We found the Health Questionnaire to be valid and reliable when used in ordinary clinical practice. There was a high concordance between self-reported adherence to ART in the past seven days and treatment outcome, with 94% of patients who reported optimal adherence having a viral load <50 copies/ml. The main determinants of optimal adherence were heterosexual transmission path, being born in Sweden, being male, not reporting experience of ART side effects and being fully satisfied with care. Conclusion The nine-item Health Questionnaire can identify patients at risk of treatment failure, those in need of clinical assessment of adverse events and those with impaired physical health. PMID:27310201

  5. Patient experiences with oily skin: The qualitative development of content for two new patient reported outcome questionnaires

    PubMed Central

    Arbuckle, Robert; Atkinson, Mark J; Clark, Marci; Abetz, Linda; Lohs, Jan; Kuhagen, Ilka; Harness, Jane; Draelos, Zoe; Thiboutot, Diane; Blume-Peytavi, Ulrike; Copley-Merriman, Kati

    2008-01-01

    Objective To develop the content for two new patient reported outcome (PRO) measures to: a) assess the severity of symptoms; and b) the impact of facial skin oiliness on emotional wellbeing using qualitative data from face to face, and internet focus groups in Germany and the US. Methods Using input from initial treatment satisfaction focus groups (n = 42), a review of relevant literature and expert clinicians (n = 3), a discussion guide was developed to guide qualitative inquiry using Internet focus groups (IFGs). IFGs were conducted with German (n = 26) and US (n = 28) sufferers of oily skin. Questionnaire items were generated using coded transcript data from the focus groups. Cognitive debriefing was conducted online with 42 participants and face to face with an additional five participants to assess the comprehension of the items. Results There were equal numbers of male and female participants; mean age was 35.4 (SD 9.3) years. On average, participants had had oily skin for 15.2 years, and 74% (n = 40) reported having mild-moderate acne. Participants reported using visual, tactile and sensory (feel without touching their face) methods to evaluate the severity of facial oiliness. Oily facial skin had both an emotional and social impact, and was associated with feelings of unattractiveness, self-consciousness, embarrassment, irritation and frustration. Items were generated for a measure of oily skin severity (Oily Skin Self-Assessment Scale) and a measure of the impact of oily skin on emotional well-being (Oily Skin Impact Scale). Cognitive debriefing resulted in minor changes to the draft items and confirmed their face and content validity. Conclusion The research provides insight into the experience of having oily skin and illustrates significant difficulties associated with the condition. Item content was developed for early versions of two PRO measures of the symptoms and emotional impact of oily facial skin. The psychometric validation of these measures

  6. Development of a new occupational balance-questionnaire: incorporating the perspectives of patients and healthy people in the design of a self-reported occupational balance outcome instrument

    PubMed Central

    2014-01-01

    Background Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties. Methods We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach’s alpha. Results The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age

  7. Change Trajectories for the Youth Outcome Questionnaire Self-Report: Identifying Youth at Risk for Treatment Failure

    ERIC Educational Resources Information Center

    Cannon, Jennifer A. N.; Warren, Jared S.; Nelson, Philip L.; Burlingame, Gary M.

    2010-01-01

    This study used longitudinal youth outcome data in routine mental health services to test a system for identifying cases at risk for treatment failure. Participants were 2,715 youth (M age = 14) served in outpatient managed care and community mental health settings. Change trajectories were developed using multilevel modeling of archival data.…

  8. Patient-Reported Outcomes Following Breast Reconstruction Surgery and Therapeutic Mammoplasty: Prospective Evaluation 1 Year Post-Surgery with BREAST-Q Questionnaire.

    PubMed

    Shekhawat, Laxmi; Busheri, Laleh; Dixit, Santosh; Patel, Chaula; Dhar, Upendra; Koppiker, Chaitanyanand

    2015-12-01

    Breast Cancer (BC) treatment leads to mutilation and destruction of breast shape with negative effects on body image and self-esteem.One of the main goals of reconstructive and oncoplastic breast surgery is to satisfy patients and improve their quality of life (QoL).Therefore, it is important to assess the patient experience post-surgery by means of patient-reported outcome measures (PROMs) that focus on the patient's perception of the surgery and surgical care, as well as psychosocial well-being and physical functioning. The objective of the current study was to identify predictors of patient satisfaction such as breast appearance including implant type in a selective sample of women who underwent breast reconstruction surgery using implants. Participants in this prospective study were women, (age 26-75 years) that were newly diagnosed with breast carcinoma. All consecutive patients who underwent breast reconstruction between January 2013 and October 2014 were asked to complete the BREAST-Q questionnaire 1 year after surgery. 120 patients underwent unilateral breast reconstruction using implant. While 38 patients underwent reconstruction with opposite breast reduction symmertization, 27 patients underwent therapeutic mammoplasty. The response rate for BREAST-Q questionnaire completion was 98 % with 147 out of 150 study participants completed the questionnaire. From the data collected from 147 patients, the responses could be distributed into 4 distinct groups based on the reconstruction outcomes namely "very much satisfied" (93 %) or "definitely and mostly satisfied" (94 %) or "satisfied" with the outcome (88 %) or "definitely agree on having reconstruction rather than the alternative of having no breast "(91 %).The results showed significant improvement in all four areas that were evaluated after surgery namely satisfaction with the appearance of the breasts, psychosocial, sexual and physical well-being. While the reconstruction surgery had an overall

  9. Patients’ attitudes and perceptions of two health-related quality-of-life questionnaires used to collect patient-reported outcome measures in the English National Health Service: A qualitative study of patients undergoing cardiac interventions

    PubMed Central

    Hinder, Susan; Steele, Sharon; Gibbons, Elizabeth; Jackson, Mark

    2013-01-01

    Objectives: To explore patients’ views on the EuroQol-5D and Coronary Revascularisation Outcome Questionnaire, tools currently used for collecting patient-reported outcome measures in the English National Health Service. The key questions were as follows: (1) whether patients consider them sensitive enough to detect change in their health after cardiovascular disease interventions and (2) whether they consider the health-related quality-of-life questions as meaningful. Methods: Data were collected on patients’ views using focus groups. We held four focus groups selecting participants on the basis of their baseline and follow-up EuroQol-5D scores. Data were analysed using framework analysis and grounded theory. Results: Focus group participants confirmed that they had derived substantial health benefits from their cardiac interventions despite the lack of measurable effects on the EuroQol-5D scores. Participants felt that the EuroQol-5D questionnaire was limited because of the following reasons: Their health fluctuates from day to day. They had difficulty assessing their general health status on the visual analogue scale. They felt that the Coronary Revascularisation Outcome Questionnaire was limited because of the following reasons: They did not understand the clinical terms used. The impact of tiredness on their quality of life was not captured. They were unable to distinguish between the effects of their heart condition and other health issues. Additionally, neither questionnaire considers the adjustments people have made to their domestic arrangements to improve their health-related quality of life. Conclusion: This study provides evidence that the two questionnaires do not capture some aspects of health that patients consider important. Furthermore, the presence of co-morbidities masks the symptoms relating to the heart disease and the effect of their cardiac interventions. Future work on patient-reported outcome measures should consider developing new

  10. Is Real-Time Feedback of Burn-Specific Patient-Reported Outcome Measures in Clinical Settings Practical and Useful? A Pilot Study Implementing the Young Adult Burn Outcome Questionnaire.

    PubMed

    Ryan, Colleen M; Lee, Austin F; Kazis, Lewis E; Shapiro, Gabriel D; Schneider, Jeffrey C; Goverman, Jeremy; Fagan, Shawn P; Wang, Chao; Kim, Julia; Sheridan, Robert L; Tompkins, Ronald G

    2016-01-01

    Long-term follow-up care of survivors after burn injuries can potentially be improved by the application of patient-reported outcome measures (PROMs). PROMs can inform clinical decision-making and foster communication between the patient and provider. There are no previous reports using real-time, burn-specific PROMs in clinical practice to track and benchmark burn recovery over time. This study examines the feasibility of a computerized, burn-specific PROM, the Young Adult Burn Outcome Questionnaire (YABOQ), with real-time benchmarking feedback in a burn outpatient practice. The YABOQ was redesigned for formatting and presentation purposes using images and transcribed to a computerized format. The redesigned questionnaire was administered to young adult burn survivors (ages 19-30 years, 1-24 months from injury) via an ipad platform in the office before outpatient visits. A report including recovery curves benchmarked to a nonburned relatively healthy age-matched population and to patients with similar injuries was produced for the domains of physical function and social function limited by appearance. A copy of the domain reports as well as a complete copy of the patient's responses to all domain questions was provided for use during the clinical visit. Patients and clinicians completed satisfaction surveys at the conclusion of the visit. Free-text responses, included in the satisfaction surveys, were treated as qualitative data adding contextual information about the assessment of feasibility. Eleven patients and their providers completed the study for 12 clinical visits. All patients found the ipad survey and report "easy" or "very easy" to use. In nine instances, patients "agreed" or "strongly agreed" that it helped them communicate their situation to their doctor/nurse practitioner. Patients "agreed" or "strongly agreed" that the report helped them understand their course of recovery in 10 visits. In 11 visits, the patients "agreed" or "strongly agreed" that

  11. Further Evaluation of the Outcome Questionnaire-45.2

    ERIC Educational Resources Information Center

    Rice, Kenneth G.; Suh, Hanna; Ege, Engin

    2014-01-01

    Data from clinical and nonclinical samples ("Ns" = 2,096, 618) were used to evaluate and replicate the measurement structure of the Outcome Questionnaire-45.2. Different measurement models and invariance tests were evaluated and the best psychometric support was found for a shortened measure of two factors: overall maladjustment and…

  12. The Bilevel Structure of the Outcome Questionnaire-45

    ERIC Educational Resources Information Center

    Bludworth, Jamie L.; Tracey, Terence J. G.; Glidden-Tracey, Cynthia

    2010-01-01

    The structure of the Outcome Questionnaire-45 (Lambert et al., 2001) was examined in a sample of 1,100 university counseling center clients using confirmatory factor analysis. Specifically, the relative fit of 1-factor, 3-factor orthogonal, 3-factor oblique, 4-factor hierarchical, and 4-factor bilevel models were examined. Although the 3-factor…

  13. Psychometric Validation of the Preschool Outcome Questionnaire: A Preschool Treatment Outcome Instrument

    ERIC Educational Resources Information Center

    Barker, David H.; Lloyd, Thad Q.; Stewart, Peter K.; Wells, M. Gawain

    2010-01-01

    Developing normed treatment outcome measures is important to research addressing treatment effectiveness and to improved clinical care. The Preschool Outcome Questionnaire (POQ) is a new measure designed for use with preschool children aged two to six. Designed in collaboration with parents and clinicians, the POQ is brief, easy to administer,…

  14. Imputation by the mean score should be avoided when validating a Patient Reported Outcomes questionnaire by a Rasch model in presence of informative missing data

    PubMed Central

    2011-01-01

    Background Nowadays, more and more clinical scales consisting in responses given by the patients to some items (Patient Reported Outcomes - PRO), are validated with models based on Item Response Theory, and more specifically, with a Rasch model. In the validation sample, presence of missing data is frequent. The aim of this paper is to compare sixteen methods for handling the missing data (mainly based on simple imputation) in the context of psychometric validation of PRO by a Rasch model. The main indexes used for validation by a Rasch model are compared. Methods A simulation study was performed allowing to consider several cases, notably the possibility for the missing values to be informative or not and the rate of missing data. Results Several imputations methods produce bias on psychometrical indexes (generally, the imputation methods artificially improve the psychometric qualities of the scale). In particular, this is the case with the method based on the Personal Mean Score (PMS) which is the most commonly used imputation method in practice. Conclusions Several imputation methods should be avoided, in particular PMS imputation. From a general point of view, it is important to use an imputation method that considers both the ability of the patient (measured for example by his/her score), and the difficulty of the item (measured for example by its rate of favourable responses). Another recommendation is to always consider the addition of a random process in the imputation method, because such a process allows reducing the bias. Last, the analysis realized without imputation of the missing data (available case analyses) is an interesting alternative to the simple imputation in this context. PMID:21756330

  15. Validation of a Parent Report Questionnaire

    PubMed Central

    Trabulsi, Jillian; Yao, Manjiang; Bevans, Katherine B.; DeRusso, Patricia A.

    2015-01-01

    Objective. To evaluate the reliability and validity of the Infant Gastrointestinal Symptom Questionnaire (IGSQ), a tool to assess feeding tolerance in infants. Methods. Qualitative methods were used to develop IGSQ content across 5 symptom clusters, yielding a 13-item index of parent-reported infant digestion and elimination behaviors over the prior 7 days. Classical psychometric methods evaluated factor structure, interrater and retest reliability, and validity in 4 prospective studies of 836 infants. Results. Interrater and retest reliability were acceptable to good. IGSQ Index score was highly correlated (r = 0.89) with daily parent reports. IGSQ scores were significantly different between infants whose parents planned to switch formulas because of perceived feeding problems and those without parental concerns. Conclusions. The IGSQ is a practical, reliable, and valid method for assessment of infant gastrointestinal-related behaviors. Its use in clinical studies can provide empirical evidence to advance parent education regarding both normal and clinically meaningful feeding-related behaviors. PMID:25758425

  16. Student Outcomes Report.

    ERIC Educational Resources Information Center

    Clagett, Craig A.

    Prince George's Community College (PGCC) created a Student Outcomes Report in December 1996 that measures course completion, retention, student achievement, program completion, transfer, and certification. Findings indicated that though the course pass rate was 75%, individual course completion ranged from 44% to 100%. Divisional pass rates ranged…

  17. Factor analysis of treatment outcomes from a UK specialist addiction service: Relationship between the Leeds Dependence Questionnaire, Social Satisfaction Questionnaire and 10-item Clinical Outcomes in Routine Evaluation

    PubMed Central

    Fairhurst, Caroline; Böhnke, Jan R; Gabe, Rhian; Croudace, Tim J; Tober, Gillian; Raistrick, Duncan

    2014-01-01

    Introduction and Aims To examine the relationship between three outcome measures used by a specialist addiction service (UK): the Leeds Dependence Questionnaire (LDQ), the Social Satisfaction Questionnaire (SSQ) and the 10-item Clinical Outcomes in Routine Evaluation (CORE-10). Design and Method A clinical sample of 715 service user records was extracted from a specialist addiction service (2011) database. The LDQ (dependence), SSQ (social satisfaction) and CORE-10 (psychological distress) were routinely administered at the start of treatment and again between 3 and 12 months post-treatment. A mixed pre/post-treatment dataset of 526 service users was subjected to exploratory factor analysis. Parallel Analysis and the Hull method were used to suggest the most parsimonious factor solution. Results Exploratory factor analysis with three factors accounted for 66.2% of the total variance but Parallel Analysis supported two factors as sufficient to account for observed correlations among items. In the two-factor solution, LDQ items and nine of the 10 CORE-10 items loaded on the first factor >0.41, and the SSQ items on factor 2 with loadings >0.63. A two dimensional summary appears sufficient and clinically meaningful. Discussion and Conclusions Among specialist addiction service users, social satisfaction appears to be a unique construct of addiction and is not the same as variation due to psychological distress or dependence. Our interpretation of the findings is that dependence is best thought of as a specific psychological condition subsumed under the construct psychological distress. [Fairhurst C, Böhnke JR, Gabe R, Croudace TJ, Tober G, Raistrick D. Factor analysis of treatment outcomes from a UK specialist addiction service: Relationship between the Leeds Dependence Questionnaire, Social Satisfaction Questionnaire and 10-item Clinical Outcomes in Routine Evaluation. Drug Alcohol Rev 2014;33:643–650] PMID:24802233

  18. Proxy-reported questionnaires for young children with asthma: a structured review.

    PubMed

    Barrett, Amy; Clark, Marci; Demuro, Carla; Esser, Dirk

    2013-08-01

    Which proxy-reported outcome measures have been developed for use with children aged 6 years and younger to assess asthma symptoms, asthma control, and asthma-specific health-related quality of life, and do these questionnaires' measurement properties support their use as end-points in clinical trials? A two-phase literature search was conducted: 1) studies describing relevant questionnaires were identified, and the questionnaires were assessed against predefined criteria; 2) studies providing information on the measurement properties of questionnaires meeting the predefined inclusion criteria were identified. Literature sources included PubMed and EMBASE databases, scientific conference proceedings, a clinical trial registry, and a quality of life instrument database. The initial search of literature databases and conference abstracts identified 631 records. 20 paediatric asthma proxy-reported outcome instruments were identified; seven met the inclusion criteria: Childhood Asthma Control Test, Control de Asma en Niños Questionnaire, Pediatric Asthma Caregiver Diary, Pediatric Asthma Control Tool, PedsQL 3.0 Short-Form 22 Asthma Module, PedsQL Asthma Symptoms Scale, and Test for Respiratory and Asthma Control in Kids. Three proxy-reported outcome instruments were considered suitable for use as end-points in paediatric asthma clinical trials; the Pediatric Asthma Caregiver Diary possesses the strongest measurement properties of the three. PMID:23143547

  19. HEALTH OUTCOMES OF OBESITY AMONG OLDER PERSONS REVEALED BY COMMUNITY-BASED SCREENING QUESTIONNAIRE

    Technology Transfer Automated Retrieval System (TEKTRAN)

    The objective of this study was to pilot test a Nutrition Health Outcomes Questionnaire (NHOQ) designed to identify overweight/obese persons at risk for funcitonal decline and increased healthcare use. The NHOQ is a 14-item self-administered survey that queries body weight/weight change, dietary pr...

  20. Introducing an Outcome Expectation Questionnaire and Its Psychometric Properties Regarding Leisure Time Physical Activity for Iranian Male Adolescent

    PubMed Central

    Abasi, Mohammad Hadi; Eslami, Ahmad Ali; Rakhshani, Fatemeh

    2015-01-01

    Background: Outcome expectation (OE) is known as a psychosocial determinant of leisure time physical activity (LTPA). Despite importance of this construct evaluation, there is no evidence of special questionnaire for measuring OE in Persian speaking Iranian male adolescents. Objectives: This article reports development and psychometric evaluation process of a specific questionnaire that evaluates OE about LTPA among Iranian male adolescents. Materials and Methods: Literature review and group discussions were used to select 26 items of this questionnaire based on 3 dimensions of OE (self-evaluation, social expectancy, and physical expectancy). All Participants (n = 720) were divided into two groups randomly after evaluating comprehensibility, face and content validity, and items analysis. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were separately operated on one of these groups for evaluation of the construct validity of questionnaire. The reliability of the questionnaire was estimated by the Cronbach α. Results: EFA extracted 3 main factors explained 45.80%, 10.31%, and 7.51% of OE variance, respectively. Almost all fit indexes in CFA were acceptable (CMIN = 107.39, CMIN/DF = 2.619, CFI = 0.938, PCFI = 0.699, RMSEA = 0.067, PCLOSE = 0.034). Finally 11 items remained in the questionnaire, which showed excellent reliability on main study (α = 0.85). Conclusions: This study provided evidence regarding the reliability and validity of the Iranian male adolescent outcome expectation about leisure time physical activity (IMAO-PAC) and illustrated that this new questionnaire can be used to measure the perceived exercise benefits among target group in observational and interventional studies. PMID:26082851

  1. How useful are the BSUG database outcome criteria: validation using the MESA questionnaire.

    PubMed

    Elbiss, H M; Thomson, A J M; Moran, P A

    2010-01-01

    Urinary stress incontinence is common, but there is a wide range of prevalence which might account for variations in definition of incontinence and variations in study methodology. Our study assessed the validity and reliability of the British Society of Urogynaecology's (BSUG) database subjective outcome scores after the tension-free vaginal tape (TVT), by correlating these with the changes in the Medical Epidemiologic and Social Aspects of Ageing (MESA) questionnaire score. A total of 100 women with urodynamic stress incontinence underwent TVT, completed a MESA questionnaire preoperatively and at 6 months postoperatively. We also collected information about three outcome measures of the BSUG database, patients' global impression of outcome and stress and urge symptom analyses. Our study showed that the postoperative patients' global impression of outcome improved significantly in 85% of cases and had 73.89% reduction in mean MESA scores (p < 0.001). The outcome measures of the BSUG database relates well to symptom improvement, based on MESA scores and these subjective assessments currently used by the BSUG's database are a valid assessment of TVT outcome. PMID:20925618

  2. [Patient-reported outcomes: definition and measurement].

    PubMed

    Botturi, Davide; Rodella, Stefania

    2014-06-01

    The concept of "patient-reported outcomes" have been proposed by the Food and Drug Administration in the year 2000, in order to describe one of the different and potential sources of information on the drug's safety and effectiveness. It represents an "umbrella" term, which covers a multiplicity of meanings and primarily identifies a conceptual approach and a methodology specifically oriented to the patients' point of view on outcomes, instead of the traditional clinical and professional perspective. The patient-reported outcomes measures are frequently self-completed questionnaires. The measures can be classified in general and specific. The first one, general, relates to the assessment of the quality of life or the health status, in the general population or in subgroups with particular health problems (eg. SF-36 Health Survey, EQ-5D). The second one, specific, mainly relates to the assessment of particular types of symptoms (eg. pain, anxiety, fear, depression) and functions (eg. daily living activities), in population's subgroups with definite health problems, undergoing or not to a healthcare procedure (eg. Adult Asthma Quality of Life Questionnaire, Kidney Disease Quality of Life Instrument, Oxford Hip Score, Oxford Knee Score). For the selection of an instrument a series of criteria needs to be taken into account, among which the psychometric properties, the expert judgement, the interpretability, the acceptability, and the feasibility of the entire process. PMID:25002284

  3. Prospects: Student Outcomes. Final Report.

    ERIC Educational Resources Information Center

    Puma, Michael J.; Karweit, Nancy; Price, Cristofer; Ricciuti, Anne; Thompson, William; Vaden-Kiernan, Michael

    This report is one of a series presenting findings from "Prospects: The Congressionally Mandated Study of Educational Growth and Opportunity." This study, conducted in response to the 1988 Hawkins-Stafford Amendments, was a major effort to examine the effects of Chapter 1 on student achievement and other school-related educational outcomes. Data…

  4. Doubtful outcome of the validation of the Rome II questionnaire: validation of a symptom based diagnostic tool

    PubMed Central

    2009-01-01

    Background Questionnaires are used in research and clinical practice. For gastrointestinal complaints the Rome II questionnaire is internationally known but not validated. The aim of this study was to validate a printed and a computerized version of Rome II, translated into Swedish. Results from various analyses are reported. Methods Volunteers from a population based colonoscopy study were included (n = 1011), together with patients seeking general practice (n = 45) and patients visiting a gastrointestinal specialists' clinic (n = 67). The questionnaire consists of 38 questions concerning gastrointestinal symptoms and complaints. Diagnoses are made after a special code. Our validation included analyses of the translation, feasibility, predictability, reproducibility and reliability. Kappa values and overall agreement were measured. The factor structures were confirmed using a principal component analysis and Cronbach's alpha was used to test the internal consistency. Results and Discussion Translation and back translation showed good agreement. The questionnaire was easy to understand and use. The reproducibility test showed kappa values of 0.60 for GERS, 0.52 for FD, and 0.47 for IBS. Kappa values and overall agreement for the predictability when the diagnoses by the questionnaire were compared to the diagnoses by the clinician were 0.26 and 90% for GERS, 0.18 and 85% for FD, and 0.49 and 86% for IBS. Corresponding figures for the agreement between the printed and the digital version were 0.50 and 92% for GERS, 0.64 and 95% for FD, and 0.76 and 95% for IBS. Cronbach's alpha coefficient for GERS was 0.75 with a span per item of 0.71 to 0.76. For FD the figures were 0.68 and 0.54 to 0.70 and for IBS 0.61 and 0.56 to 0.66. The Rome II questionnaire has never been thoroughly validated before even if diagnoses made by the Rome criteria have been compared to diagnoses made in clinical practice. Conclusion The accuracy of the Swedish version of the Rome II is of

  5. Patient reported outcome measures in septorhinoplasty surgery

    PubMed Central

    Fraser, LR; Ward, MJ; Sunkaraneni, VS; Harries, PG; Salib, RJ

    2015-01-01

    Introduction Surgical procedures incorporating a cosmetic element such as septorhinoplasty and otoplasty are currently under threat in the National Health Service (NHS) as they are deemed to be procedures of ‘limited clinical benefit’ by many primary care providers. Patient reported outcome measures (PROMs), which assess the quality of care delivered from the patients’ perspective, are becoming increasingly important in documenting the effectiveness of such procedures. Methods The Rhinoplasty Outcomes Evaluation (ROE) questionnaire, a validated PROM tool, was used to assess patient satisfaction in 141 patients undergoing septorhinoplasty surgery over a 90-month period at the University Hospital Southampton NHS Foundation Trust. Results Overall, 100 patients with a mean follow-up period of 36 months completed the study. The mean ROE score was 73.3%. In addition, 75% of patients questioned were happy with the final result of their operation and 83% would undergo the procedure again if required. These benefits occurred irrespective of age, sex and primary versus revision surgery, and were maintained for up to 71 months following surgery. Conclusions This study has shown that patients are generally satisfied with their functional and cosmetic outcomes following septorhinoplasty surgery. These results help support the case for septorhinoplasty surgery to continue being funded as an NHS procedure. PMID:25519270

  6. Psychometrics of the Personal Questionnaire: A client-generated outcome measure.

    PubMed

    Elliott, Robert; Wagner, John; Sales, Célia M D; Rodgers, Brian; Alves, Paula; Café, Maria J

    2016-03-01

    We present a range of evidence for the reliability and validity of data generated by the Personal Questionnaire (PQ), a client-generated individualized outcome measure, using 5 data sets from 3 countries. Overall pretherapy mean internal consistency (alpha) across clients was .80, and within-client alphas averaged .77; clients typically had 1 or 2 items that did not vary with the other items. Analyses of temporal structure indicated high levels of between-clients variance (58%), moderate pretherapy test-retest correlation (r = .57), and high session-to-session Lag-1 autocorrelation (.82). Scores on the PQ provided clear evidence of convergence with a range of outcome measures (within-client r = .41). Mean pre-post effects were large (d = 1.25). The results support a revised caseness cutoff of 3.25 and a reliable change index interval of 1.67. We conclude that PQ data meet criteria for evidence-based, norm-referenced measurement of client psychological distress for supporting psychotherapy practice and research. (PsycINFO Database Record PMID:26075406

  7. Measuring health outcomes of a multidisciplinary care approach in individuals with chronic environmental conditions using an abbreviated symptoms questionnaire

    PubMed Central

    Fox, Roy; Sampalli, Tara; Fox, Jonathan

    2008-01-01

    The Nova Scotia Environmental Health Centre is a treatment facility for individuals with chronic environmental conditions such as multiple chemical sensitivity, chronic fatigue syndrome, fibromyalgia, chronic respiratory conditions and in some cases chronic pain. The premise of care is to provide a patient-centred multidisciplinary care approach leading to self-management strategies. In order to measure the outcome of the treatment in these complex problems, with overlapping diagnoses, symptoms in many body systems and suspected environmental triggers, a detailed symptoms questionnaire was developed specifically for this patient population and validated. Results from a pilot study in which an abbreviated symptoms questionnaire based on the top reported symptoms captured in previous research was used to measure the efficacy of a multidisciplinary care approach in individuals with multiple chemical sensitivity are presented in this paper. The purpose of this study was to examine the extent, type and patterns of changes over time in the top reported symptoms with treatment measured using the abbreviated symptoms questionnaire. A total of 183 active and 109 discharged patients participated in the study where the health status was measured at different time periods of follow up since the commencement of treatment at the Centre. The findings from this study were successful in generating an initial picture of the nature and type of changes in these symptoms. For instance, symptoms such as difficulty concentrating, sinus conditions and tiredness showed early improvement, within the first 6 months of being in treatment, while others, such as fatigue, hoarseness or loss of voice, took longer while others showed inconsistent changes warranting further enquiry. A controlled longitudinal study is planned to confirm the findings of the pilot study. PMID:21197341

  8. Patient-Reported Outcome Questionnaire for Systemic Mastocytosis

    ClinicalTrials.gov

    2015-03-02

    Aggressive Systemic Mastocytosis (ASM); Systemic Mastocytosis With Associated Clonal Hematological Non-mast Cell Lineage Disease (SM-AHNMD); Mast Cell Leukemia (MCL); Smoldering Systemic Mastocytosis (SSM); Indolent Systemic Mastocytosis (ISM) [ISM Subgroup Fully Recruited

  9. The Menstrual Joy Questionnaire Items Alone Can Positively Prime Reporting of Menstrual Attitudes and Symptoms

    ERIC Educational Resources Information Center

    Aubeeluck, Aimee; Maguire, Moira

    2002-01-01

    Chrisler, Johnston, Champagne, and Preston (1994) reported that the title of the Menstrual Joy Questionnaire (MJQ) could prime participants to report positive changes on the Menstrual Distress Questionnaire (MDQ) and greater endorsement of "menstruation as a natural event" on the Menstrual Attitudes Questionnaire (MAQ). This study is a partial…

  10. Patient-reported outcomes in borderline personality disorder

    PubMed Central

    Hasler, Gregor; Hopwood, Christopher J.; Jacob, Gitta A.; Brändle, Laura S.; Schulte-Vels, Thomas

    2014-01-01

    Patient-reported outcome (PRO) refers to measures that emphasize the subjective view of patients about their health-related conditions and behaviors. Typically, PROs include self-report questionnaires and clinical interviews. Defining PROs for borderline personality disorder (BPD) is particularly challenging given the disorder's high symptomatic heterogeneity, high comorbidity with other psychiatric conditions, highly fluctuating symptoms, weak correlations between symptoms and functional outcomes, and lack of valid and reliable experimental measures to complement self-report data. Here, we provide an overview of currently used BPD outcome measures and discuss them from clinical, psychometric, experimental, and patient perspectives. In addition, we review the most promising leads to improve BPD PROs, including the DSM-5 Section III, the Recovery Approach, Ecological Momentary Assessments, and novel experimental measures of social functioning that are associated with functional and social outcomes. PMID:25152662

  11. Outcome-Reporting Bias in Education Research

    ERIC Educational Resources Information Center

    Pigott, Therese D.; Valentine, Jeffrey C.; Polanin, Joshua R.; Williams, Ryan T.; Canada, Dericka D.

    2013-01-01

    Outcome-reporting bias occurs when primary studies do not include information about all outcomes measured in a study. When studies omit findings on important measures, efforts to synthesize the research using systematic review techniques will be biased and interpretations of individual studies will be incomplete. Outcome-reporting bias has been…

  12. Development of a Short Questionnaire to Measure an Extended Set of Job Demands, Job Resources, and Positive Health Outcomes: The New Brief Job Stress Questionnaire

    PubMed Central

    INOUE, Akiomi; KAWAKAMI, Norito; SHIMOMITSU, Teruichi; TSUTSUMI, Akizumi; HARATANI, Takashi; YOSHIKAWA, Toru; SHIMAZU, Akihito; ODAGIRI, Yuko

    2014-01-01

    This study aimed to investigate the reliability and construct validity of a new version of the Brief Job Stress Questionnaire (New BJSQ), which measures an extended set of psychosocial factors at work by adding new scales/items to the current version of the BJSQ. Additional scales/items were extensively collected from theoretical job stress models and similar questionnaires in several countries. Scales/items were field-tested and refined through a pilot internet survey. Finally, an 84-item questionnaire (141 items in total when combined with the current BJSQ) was developed. A nationally representative survey was administered to employees in Japan (n=1,633) to examine the reliability and construct validity. Most scales showed acceptable levels of internal consistency and test-retest reliability. Principal component analyses showed that the first factor explained 50% or greater proportion of the variance in most scales. A scale factor analysis and a correlation analysis showed that these scales fit the theoretical expectations. These findings provided a piece of evidence that the New BJSQ scales are reliable and valid. Although more detailed content and construct validity should be examined in future study, the New BJSQ is a useful instrument to evaluate psychosocial work environment and positive mental health outcomes in the current workplace. PMID:24492763

  13. Reported Voice Difficulties in Student Teachers: A Questionnaire Survey

    ERIC Educational Resources Information Center

    Fairfield, Carol; Richards, Brian

    2007-01-01

    As professional voice users, teachers are particularly at risk of abusing their voices and developing voice disorders during their career. In spite of this, attention paid to voice care in the initial training and further professional development of teachers is unevenly spread and insufficient. This article describes a questionnaire survey of 171…

  14. Correlation of Patient-reported Symptom Outcomes and Treadmill Test Outcomes after Treatment for Aortoiliac Claudication

    PubMed Central

    Murphy, Timothy P.; Reynolds, Matthew R.; Cohen, David J.; Regensteiner, Judith G.; Massaro, Joseph M.; Cutlip, Donald E.; Mohler, Emile R.; Cerezo, Joselyn; Oldenburg, Niki C.; Thum, Claudia C.; Goldberg, Suzanne; Hirsch, Alan T.

    2016-01-01

    Purpose To examine the relationship between objective treadmill test outcomes and subjective symptom outcomes among patients with claudication treated with stent revascularization (ST) compared with supervised exercise (SE). Materials and Methods Five scales of the Peripheral Artery Questionnaire and Walking Impairment Questionnaire were correlated with peak walking time and treadmill claudication onset time. Results The correlation between change in disease-specific quality of life (QOL) and change in peak walking time differed according to treatment group, with statistically significant correlations for all five scales for the ST group and weaker trends for the SE group, only one of which was statistically significant. In contrast, improvements in disease-specific QOL correlated well with increases in claudication onset time, with no significant interaction with treatment group for any of the five scales. Conclusions Disease-specific QOL results at 6 months in the CLEVER (Claudication: Exercise Vs. Endoluminal Revascularization) study show that improved maximal treadmill walking in patients with claudication treated with SE correlated poorly with self-reported symptom relief. Conversely, patients treated with ST showed good correlation between improved maximal treadmill walking and self-reported symptom improvement. The correlation between claudication onset time and self-reported symptom relief was good across treatment groups. This finding indicates that traditional objective treadmill test outcomes may not correlate well with symptom relief in patients with claudication. Future studies should investigate these data and improve understanding of patient relevance of traditional objective treadmill-based treatment outcomes. PMID:23906799

  15. Outcome Measure of Pain in Patients with Lumbar Disc Herniation: Validation Study of the Iranian version of Pain Sensitivity Questionnaire

    PubMed Central

    Azhari, Shirzad; Shahzadi, Sohrab; Nayeb Aghaei, Hossain; Mohammadi, Hassan Reza; Montazeri, Ali

    2016-01-01

    Study Design Cross-sectional. Purpose To translate and culturally adapt an Iranian version of the Pain Sensitivity Questionnaire (PSQ) in Iran. Overview of Literature Instruments measuring patient reported outcomes should satisfy certain psychometric properties. Methods The PSQ was translated following cross-cultural adaptation guidelines. A total of 101 patients with lumbar disc herniation (LDH), and 39 healthy cases were included in the study. All participants completed the PSQ and the Pain Catastrophizing Scale (PCS). The internal consistency, test-retest reliability, known group comparison, criterion validity and item-scale correlations were assessed. Results The mean age of participants was 51.7 years. Reliability, validity and correlation of PSQ and PCS showed satisfactory results. Cronbach's alpha coefficients were 0.81 for PSQ-total, 0.82 for PSQ-minor, and 0.82 for PSQ-moderate. The intraclass correlation coefficients value was 0.84 (0.616–0.932) indicating an excellent test-retest reliability. The instrument discriminated well between sub-groups of patients who differed in a standard predictive measure of LDH surgery (the Finneson–Cooper score). Total PSQ were also significantly correlated with the total scores of the PCS, lending support to its good convergent validity. Additionally, the correlation of each item with its hypothesized domain on the PSQ indicated acceptable results, suggesting that the items had a substantial relationship with their own domains. Conclusions The adapted Iranian PSQ is a valid and reliable questionnaire for the assessment of pain in patients with LDH. PMID:27340527

  16. Student Outcomes: Annual Summary Report.

    ERIC Educational Resources Information Center

    Prince George's Community Coll., Largo, MD. Office of Institutional Research.

    Each year a study is conducted at Prince George's Community College (PGCC) to update student outcomes data using quantifiable measures of student achievement. Data for the 1989 study were obtained from the college's student information system, the University of Maryland (UM) system, and surveys of all 825 fiscal year 1988 graduates and 118 of…

  17. Advances in Patient-Reported Outcomes: The NIH PROMIS® Measures

    PubMed Central

    Broderick, Joan E.; DeWitt, Esi Morgan; Rothrock, Nan; Crane, Paul K.; Forrest, Christopher B.

    2013-01-01

    Patient-reported outcomes (PRO) are questionnaire measures of patients’ symptoms, functioning, and health-related quality of life. They are designed to provide important clinical information that generally cannot be captured with objective medical testing. In 2004, the National Institutes of Health launched a research initiative to improve the clinical research enterprise by developing state-of-the-art PROs. The NIH Patient-Reported Outcomes Measurement System (PROMIS) and Assessment Center are the products of that initiative. Adult, pediatric, and parent-proxy item banks have been developed by using contemporary psychometric methods, yielding rapid, accurate measurements. PROMIS currently provides tools for assessing physical, mental, and social health using short-form and computer-adaptive testing methods. The PROMIS tools are being adopted for use in clinical trials and translational research. They are also being introduced in clinical medicine to assess a broad range of disease outcomes. Recent legislative developments in the United States support greater efforts to include patients’ reports of health experience in order to evaluate treatment outcomes, engage in shared decision-making, and prioritize the focus of treatment. PROs have garnered increased attention by the Food and Drug Administration (FDA) for evaluating drugs and medical devices. Recent calls for comparative effectiveness research favor inclusion of PROs. PROs could also potentially improve quality of care and disease outcomes, provide patient-centered assessment for comparative effectiveness research, and enable a common metric for tracking outcomes across providers and medical systems. PMID:25848562

  18. The Parenting Questionnaire: An Inventory for Assessing Outcomes of Adlerian Parent Groups.

    ERIC Educational Resources Information Center

    Tiffany, Jeanne; Tollefson, Nona

    This study field tests and evaluates the Parenting Questionnaire, an instrument designed to assess parental attitudes and behavior, based on the child-raising theories of Dreikurs and Dinkmeyer and the Adlerian model for parent study groups. Dreikurs and Adler stress the purposive nature of children's behavior or misbehavior, and teach parents to…

  19. Staff Stressors and Staff Outcomes in Services for Adults with Intellectual Disabilities: The Staff Stressor Questionnaire.

    ERIC Educational Resources Information Center

    Hatton, Chris; Rivers, Morna; Mason, Heidi; Mason, Linda; Kiernan, Chris; Emerson, Eric; Alborz, Alison; Reeves, David

    1999-01-01

    A study involving 512 staff serving individuals with mental retardation investigated the validity of the 33-item Staff Stressor Questionnaire (SSQ). The SSQ measures potential stressors, including user challenging behavior, poor user skills, lack of staff support, lack of resources, low-status job, bureaucracy, and work/home conflict. Results show…

  20. Validating a Children's Self-Report Plate Waste Questionnaire

    ERIC Educational Resources Information Center

    Forrestal, Sarah G.; Issel, L. Michele; Kviz, Frederick J.; Chávez, Noel

    2008-01-01

    Purpose/Objectives: The National School Lunch Program is well situated to address the vulnerability of lower income children at increased risk for both under and overnutrition. Evidence suggests, however, that a significant amount of food served in the program goes uneaten. One way to monitor this problem is through children's self-reported plate…

  1. Student Learning Outcomes Assessment Report.

    ERIC Educational Resources Information Center

    Clagett, Craig A.

    Designed to meet the mandate of the 1988 Reorganization of Maryland Higher Education Act, this 1991 report summarizes data from a number of studies of student achievement at Prince George's Community College (PGCC). Because PGCC has routinely collected and analyzed data on many of the required indicators, longitudinal data are presented where…

  2. Workplace bullying in the UK NHS: a questionnaire and interview study on prevalence, impact and barriers to reporting

    PubMed Central

    Carter, Madeline; Thompson, Neill; Crampton, Paul; Morrow, Gill; Burford, Bryan; Gray, Christopher; Illing, Jan

    2013-01-01

    Objectives To examine the prevalence and impact of bullying behaviours between staff in the National Health Service (NHS) workplace, and to explore the barriers to reporting bullying. Design Cross-sectional questionnaire and semi-structured interview. Setting 7 NHS trusts in the North East of England. Participants 2950 NHS staff, of whom 43 took part in a telephone interview. Main outcome measures Prevalence of bullying was measured by the revised Negative Acts Questionnaire (NAQ-R) and the impact of bullying was measured using indicators of psychological distress (General Health Questionnaire, GHQ-12), intentions to leave work, job satisfaction and self-reported sickness absence. Barriers to reporting bullying and sources of bullying were also examined. Results Overall, 20% of staff reported having been bullied by other staff to some degree and 43% reported having witnessed bullying in the last 6 months. Male staff and staff with disabilities reported higher levels of bullying. There were no overall differences due to ethnicity, but some differences were detected on several negative behaviours. Bullying and witnessing bullying were associated with lower levels of psychological health and job satisfaction, and higher levels of intention to leave work. Managers were the most common source of bullying. Main barriers to reporting bullying were the perception that nothing would change, not wanting to be seen as a trouble-maker, the seniority of the bully and uncertainty over how policies would be implemented and bullying cases managed. Data from qualitative interviews supported these findings and identified workload pressures and organisational culture as factors contributing to workplace bullying. Conclusions Bullying is a persistent problem in healthcare organisations which has significant negative outcomes for individuals and organisations.

  3. Case identification of depression with self-report questionnaires.

    PubMed

    Sheeran, Thomas; Zimmerman, Mark

    2002-01-31

    Many self-report measures that are used to identify cases of depression are symptom severity measures that are adopted for diagnostic purposes by use of cutoff scores. A troublesome problem with this approach is that optimal cutoff scores often vary across studies, which increases the difficulty of cross-study comparisons. This study evaluated the performance of a DSM-IV based depression screening scale, the Diagnostic Inventory for Depression. We compared the diagnostic performance of two different approaches to scoring the DID: a cutoff scoring approach and a standardized DSM-IV symptom-summation algorithm. Clinical diagnosis based on a semi-structured interview was the standard of comparison. Receiver operating characteristic (ROC) analysis indicated that a DID cutoff score performed comparably to the DID algorithmic approach in identifying cases. This finding is in contrast to prior research which suggested that algorithmic approaches might improve test performance over the cutoff score approach. The manner by which a user might choose the appropriate scale-scoring method for case identification is discussed. PMID:11850051

  4. The impact of an electronic health questionnaire on symptom management and behavior reporting for breast cancer survivors.

    PubMed

    Bock, Meredith; Moore, Dan; Hwang, Jimmy; Shumay, Dianne; Lawson, Laurell; Hamolsky, Deborah; Esserman, Laura; Rugo, Hope; Chien, A Jo; Park, John; Munster, Pamela; Melisko, Michelle

    2012-08-01

    Breast cancer (BC) patients experience multiple symptoms as a result of diagnosis and treatment. While surveillance for detecting cancer recurrence is fundamental to follow-up care, managing symptoms, and promoting health behaviors are equally important. UCSF has implemented a secure online health questionnaire enabling BC patients to provide updates of their health history and symptoms. We randomly selected a sample of stage I-III BC patients (n = 106) who completed a questionnaire before a medical oncology visit between August 2010 and January 2011 and consented to have data used for research. We conducted a chart review calculating the number of symptoms reported in the questionnaire, the clinic note only, and both questionnaire and clinic note, excluding chronic symptoms addressed previously. Self-reported data on exercise and alcohol consumption was compared to documentation of these lifestyle factors in clinic notes. Patients reported significantly more symptoms using the online questionnaire (mean = 3.8, range 0-13) than were documented by the provider in clinic notes (mean = 1.8, range 0-7; p < 0.001 for the difference). A regression plot comparing the percentage of symptoms agreed upon by the patient and provider and the percentage of symptoms addressed yields a slope of 0.56 (95 % CI 0.41-0.71). The number of self-reported symptoms correlates with self-reported Karnofsky scale such that the number of symptoms reported by the patient increases linearly with this score until a threshold and it then plateaus (p < 0.001). Exercise behavior and alcohol consumption were reported in 100 % of the online questionnaires, but was documented in only 30/106 (28 %) and 75/106 (70 %) of charts reviewed. In 19/75 (25 %) charts with alcohol consumption documented, there was substantial discordance between patient and clinician reporting. Electronic data collection of BC patient-reported outcomes has a positive effect on symptom management and identification of

  5. Measuring Resource Utilization: A Systematic Review of Validated Self-Reported Questionnaires.

    PubMed

    Leggett, Laura E; Khadaroo, Rachel G; Holroyd-Leduc, Jayna; Lorenzetti, Diane L; Hanson, Heather; Wagg, Adrian; Padwal, Raj; Clement, Fiona

    2016-03-01

    A variety of methods may be used to obtain costing data. Although administrative data are most commonly used, the data available in these datasets are often limited. An alternative method of obtaining costing is through self-reported questionnaires. Currently, there are no systematic reviews that summarize self-reported resource utilization instruments from the published literature.The aim of the study was to identify validated self-report healthcare resource use instruments and to map their attributes.A systematic review was conducted. The search identified articles using terms like "healthcare utilization" and "questionnaire." All abstracts and full texts were considered in duplicate. For inclusion, studies had to assess the validity of a self-reported resource use questionnaire, to report original data, include adult populations, and the questionnaire had to be publically available. Data such as type of resource utilization assessed by each questionnaire, and validation findings were extracted from each study.In all, 2343 unique citations were retrieved; 2297 were excluded during abstract review. Forty-six studies were reviewed in full text, and 15 studies were included in this systematic review. Six assessed resource utilization of patients with chronic conditions; 5 assessed mental health service utilization; 3 assessed resource utilization by a general population; and 1 assessed utilization in older populations. The most frequently measured resources included visits to general practitioners and inpatient stays; nonmedical resources were least frequently measured. Self-reported questionnaires on resource utilization had good agreement with administrative data, although, visits to general practitioners, outpatient days, and nurse visits had poorer agreement.Self-reported questionnaires are a valid method of collecting data on healthcare resource utilization. PMID:26962773

  6. Alaska Performance Scholarship Outcomes Report 2014

    ERIC Educational Resources Information Center

    Rae, Brian

    2014-01-01

    The 2014 Alaska Performance Scholarship (APS) Outcomes Report analyzes the characteristics of high school graduates, those who were eligible to receive the scholarship, and those who went on to make use of it during the three years of the scholarship's existence. The analysis includes their geographic, gender, ethnic, and socioeconomic…

  7. Clinical Assessment of Affective Instability: Comparing EMA Indices, Questionnaire Reports, and Retrospective Recall

    ERIC Educational Resources Information Center

    Solhan, Marika B.; Trull, Timothy J.; Jahng, Seungmin; Wood, Phillip K.

    2009-01-01

    Traditional self-report measures of psychopathology may be influenced by a variety of recall biases. Ecological momentary assessment (EMA) reduces these biases by assessing individuals' experiences as they occur in their natural environments. This study examines the discrepancy between trait questionnaire, retrospective report, and EMA measures of…

  8. Patient-reported Outcomes in Cystic Fibrosis

    PubMed Central

    Goss, Christopher H.; Quittner, Alexandra L.

    2007-01-01

    Over the past 20 years, there has been tremendous progress in the area of patient-reported outcomes (PROs). A PRO instrument is defined as any measure of a patient's health status that is elicited directly from the patient and assesses how the patient “feels or functions with respect to his or her health condition.” The advances seen in clinical research regarding PROs has been mirrored in research in cystic fibrosis (CF). A large number of instruments have been used for both therapeutic and nontherapeutic clinical research for many chronic conditions. This review will summarize a history of the development of PROs and how PROs are viewed by the U.S. Food and Drug Administration. We will then review the current state of the art of patient-reported outcomes in CF, specifically addressing the evaluation of different PRO instruments in terms of their reliability and validity. Finally, we will delineate further areas for development of PROs in CF. We believe that the future of CF research will incorporate a more diverse selection of PRO outcome measures; these outcome measures ultimately may be incorporated into clinical care to standardize symptom assessment and provide information regarding the need for specific clinical interventions to improve the quality of care delivered to these patients. PMID:17652505

  9. Using Data Linkage to Investigate Inconsistent Reporting of Self-Harm and Questionnaire Non-Response

    PubMed Central

    Mars, Becky; Cornish, Rosie; Heron, Jon; Boyd, Andy; Crane, Catherine; Hawton, Keith; Lewis, Glyn; Tilling, Kate; Macleod, John; Gunnell, David

    2016-01-01

    The objective of this study was to examine agreement between self-reported and medically recorded self-harm, and investigate whether the prevalence of self-harm differs in questionnaire responders vs. non-responders. A total of 4,810 participants from the Avon Longitudinal Study of Parents and Children (ALSPAC) completed a self-harm questionnaire at age 16 years. Data from consenting participants were linked to medical records (number available for analyses ranges from 205–3,027). The prevalence of self-harm leading to hospital admission was somewhat higher in questionnaire non-responders than responders (2.0 vs. 1.2%). Hospital attendance with self-harm was under-reported on the questionnaire. One third reported self-harm inconsistently over time; inconsistent reporters were less likely to have depression and fewer had self-harmed with suicidal intent. Self-harm prevalence estimates derived from self-report may be underestimated; more accurate figures may come from combining data from multiple sources. PMID:26789257

  10. Using Data Linkage to Investigate Inconsistent Reporting of Self-Harm and Questionnaire Non-Response.

    PubMed

    Mars, Becky; Cornish, Rosie; Heron, Jon; Boyd, Andy; Crane, Catherine; Hawton, Keith; Lewis, Glyn; Tilling, Kate; Macleod, John; Gunnell, David

    2016-01-01

    The objective of this study was to examine agreement between self-reported and medically recorded self-harm, and investigate whether the prevalence of self-harm differs in questionnaire responders vs. non-responders. A total of 4,810 participants from the Avon Longitudinal Study of Parents and Children (ALSPAC) completed a self-harm questionnaire at age 16 years. Data from consenting participants were linked to medical records (number available for analyses ranges from 205-3,027). The prevalence of self-harm leading to hospital admission was somewhat higher in questionnaire non-responders than responders (2.0 vs. 1.2%). Hospital attendance with self-harm was under-reported on the questionnaire. One third reported self-harm inconsistently over time; inconsistent reporters were less likely to have depression and fewer had self-harmed with suicidal intent. Self-harm prevalence estimates derived from self-report may be underestimated; more accurate figures may come from combining data from multiple sources. PMID:26789257

  11. Patient-Reported Outcomes in Rheumatoid Arthritis.

    PubMed

    van Tuyl, Lilian H D; Michaud, Kaleb

    2016-05-01

    Patient-reported outcomes (PROs) and their measures have a long and important history for determining the status and treatment of patients with rheumatoid arthritis (RA). This article describes the history and evolution of PROs for RA and the current state of the field, with key examples of accepted and widely used measures, and offers some reflection on the roles of PROs for the study and management of RA. PMID:27133486

  12. Colorado Learning Difficulties Questionnaire: Validation of a Parent-Report Screening Measure

    ERIC Educational Resources Information Center

    Willcutt, Erik G.; Boada, Richard; Riddle, Margaret W.; Chhabildas, Nomita; DeFries, John C.; Pennington, Bruce F.

    2011-01-01

    This study evaluated the internal structure and convergent and discriminant evidence for the Colorado Learning Difficulties Questionnaire (CLDQ), a 20-item parent-report rating scale that was developed to provide a brief screening measure for learning difficulties. CLDQ ratings were obtained from parents of children in 2 large community samples…

  13. Does Participation in an Intervention Affect Responses on Self-Report Questionnaires?

    ERIC Educational Resources Information Center

    Baranowski, Tom; Allen, Diane D.; Masse, Louise C.; Wilson, Mark

    2006-01-01

    There has been some concern that participation in an intervention and exposure to a measurement instrument can change participants' interpretation of the items on a self-report questionnaire thereby distorting subsequent responses and biasing results. Differential item functioning (DIF) analysis using item response modeling can ascertain possible…

  14. Staff Behavior toward Children and Adolescents in a Residential Facility: A Self-Report Questionnaire

    ERIC Educational Resources Information Center

    Huitink, C.; Embregts, P. J. C. M.; Veerman, J. W.; Verhoeven, L.

    2011-01-01

    The purpose of the present study was to examine psychometric properties of the Staff Behavior toward Clients questionnaire (SBC), a self-report measure for care staff working with children and adolescents with mild to borderline intellectual disabilities in residential care. Ninety-nine care staff completed the SBC and the Strengths and…

  15. Does participation in an intervention affect responses on self-reported questionnaires?

    Technology Transfer Automated Retrieval System (TEKTRAN)

    There has been some concern that participation in an intervention and exposure to a measurement instrument can change participants' interpretation of the items on a self-report questionnaire, thereby distorting subsequent responses and biasing results. Differential item functioning (DIF) analysis us...

  16. A Comparison of Father and Mother Report of Child Behaviour on the Strengths and Difficulties Questionnaire

    ERIC Educational Resources Information Center

    Dave, Shreya; Nazareth, Irwin; Senior, Rob; Sherr, Lorraine

    2008-01-01

    To date there has been no comparison of father and mother report on the Strengths and Difficulties Questionnaire (SDQ), a standardised measure of child behaviour used widely in the UK in clinical practice and research. The objectives of the study were to investigate differences and agreement between parents on the various SDQ domains of child…

  17. Measuring changes in self-concept: a qualitative evaluation of outcome questionnaires in people having acupuncture for their chronic health problems

    PubMed Central

    Paterson, Charlotte

    2006-01-01

    Background Changes in self-concept are an important potential outcome for many interventions for people with long-term conditions. This study sought to identify and evaluate outcome questionnaires suitable for quantifying changes in self-concept in people with long-term conditions, in the context of treatment with acupuncture and Chinese medicine. Methods A literature search was followed by an evaluation of three questionnaires: The Wellbeing Questionnaire W-BQ12, the Patient Enablement Instrument (PEI), and the Arizona Integrative Outcome Scale (AIOS). A convenience sample of 23 people completed the questionnaires on two occasions and were interviewed about their experience and their questionnaire responses. All acupuncturists were interviewed. Results Changes in self-concept were common and emerged over time. The three questionnaires had different strengths and weaknesses in relation to measuring changes in self-concept. The generic AIOS had face validity and was sensitive to changes in self-concept over time, but it lacked specificity. The PEI was sensitive and specific in measuring these changes but had lower acceptability. The sensitivity of the W-BQ12 was affected by initial high scores (ceiling effect) and a shorter timescale but was acceptable and is suitable for repeated administration. The PEI and W-BQ12 questionnaires worked well in combination. Conclusion Changes in self-concept are important outcomes of complex interventions for people with long-term illness and their measurement requires carefully evaluated tools and long-term follow-up. The literature review and the analysis of the strengths and weaknesses of the questionnaires is a resource for other researchers. The W-BQ12 and the PEI both proved useful for this population and a larger quantitative study is planned. PMID:16539737

  18. A self-reported questionnaire for quantifying illness symptoms in elite athletes

    PubMed Central

    Matthews, Alexander; Pyne, David; Saunders, Philo; Fallon, Kieran; Fricker, Peter

    2010-01-01

    Purpose To develop and evaluate a questionnaire that quantifies the self-reported frequency, duration and severity of illness symptoms in highly-trained athletes. We examined whether runners had more symptoms than recreationally-active individuals, and whether runners more prone to illness were undertaking more strenuous training programs. Methods A daily illness questionnaire was administered for three months during the summer to quantify the type, frequency, duration, and severity of illness symptoms as well as the functional impact on the ability to undertake exercise performance. A total of 35 participants (12 highly-trained runners living in a community setting and 23 recreationally-active medical students) completed the questionnaire. Results Runners had a similar frequency of illness (2.1 ± 1.2 vs. 1.8 ± 2.3 episodes, mean ± SD, P = 0.58), but substantially longer duration (5.5 ± 9.9 vs 2.8 ± 3.1 days, P < 0.01) and illness load (7.7 ± 16.2 vs 4.5 ± 4.8 units, P = 0.001) than age- and sex-matched recreationally-active individuals respectively. Runners more prone to illness symptoms had marginally higher training loads. Conclusions The athlete illness questionnaire is useful for quantifying the pattern of self-reported symptoms of illness in field settings. Highly-trained runners experience longer episodes of illness with a greater impact on daily activity than recreationally-active individuals. PMID:24198538

  19. Patient-Reported Outcomes in Psoriatic Arthritis.

    PubMed

    Orbai, Ana-Maria; Ogdie, Alexis

    2016-05-01

    Patient-reported outcome (PRO) measures are an important component to assessing disease impact and therapy response in patients with psoriatic arthritis (PsA). Overall, there are few PsA-specific PROs. Most PROs used in PsA are borrowed from other diseases (eg, rheumatoid arthritis and ankylosing spondylitis) or general population PROs. PROs are used in PsA clinical trials and in the clinical management of PsA. In this review, we discuss the most commonly used PRO in PsA, including their inclusion in composite measures. Future studies may be helpful to determine the best performing PROs in patients with PsA. PMID:27133489

  20. Development and Validation of the "iCAN!"--A Self-Administered Questionnaire Measuring Outcomes/Competences and Professionalism of Medical Graduates

    ERIC Educational Resources Information Center

    Dimoliatis, Ioannis D. K.; Lyrakos, Georgios N.; Tseretopoulou, Xanthippi; Tzamalis, Theodoros; Bazoukis, George; Benos, Alexis; Gogos, Charalambos; Malizos, Konstantinos; Pneumatikos, Ioannis; Thermos, Kyriaki; Kaldoudi, Eleni; Tzaphlidou, Margaret; Papadopoulos, Iordanis N.; Jelastopulu, Eleni

    2014-01-01

    The Tuning-Medicine Project produced a set of "level one" and "level two" learning outcomes/competences to be met by European medical graduates. In the learner-centered era self-assessment becomes more and more important. Our aim was to develop a self-completion questionnaire ("iCAN!") evaluating graduates' learning…

  1. Assessing quality of life in patients with chronic leg ulceration using the Medical Outcomes Short Form-36 questionnaire.

    PubMed

    Franks, Peter J; McCullagh, Lynn; Moffatt, Christine J

    2003-02-01

    Clinician awareness of the importance of recognizing, assessing, and ultimately addressing the negative impact of chronic wounds on patient quality of life is increasing. One hundred, eighteen (118) patients (average age 78 years) participated in a study to evaluate the use of the Medical Outcomes Short Form-36 for assessing the health-related quality of life of patients with chronic leg ulceration. Most patients (104, 88%) were treated at home by community nurses. A medical history was obtained and patients completed the Short Form-36 questionnaire at baseline and after 12 weeks of receiving standard ulcer care. Published normative data were used to ascertain the effect of leg ulcers on health-related quality of life. Short Form-36 responsiveness was determined by comparing baseline and 12-week scores. Results suggest that the questionnaire is reliable for five of eight Short Form-36 domains (alpha > 0.8), with the remainder alpha > 0.7. Compared to age-sex adjusted published normative scores, patients with leg ulcers had significantly lower mean scores in the following domains: role-emotional (d = 28.6, P <0.001), social functioning (d = 22.8, P <0.001), role-functioning (d = 20.8, P <0.001), role-physical (d = 20.7, P <0.001), and bodily pain (d = 12.3, P <0.001). Short Form-36 scores barely changed between baseline and the 12-week assessment, but bodily pain improved in the 31 patients whose ulcers healed during that time (d = 14.6, P = 0.006; SRM = 0.60). Pain did not improve in patients whose ulcers remained open (d = -2.1, P = 0.45). Compared to patients whose ulcers did not heal, patients with healed ulcers experienced greater improvements in the following domains: body pain (d = 16.8, P = 0.003), mental health (d = 9.4, P = 0.013), role-physical (d = 19.7, P = 0.06), role-emotional (d = 17.2, P = 0.12), and vitality (d = 9.0, P = 0.052). The results of this study suggest that leg ulcers reduce patient quality of life and that the Short Form-36 can be used

  2. Electronic patient-reported outcome systems in oncology clinical practice.

    PubMed

    Bennett, Antonia V; Jensen, Roxanne E; Basch, Ethan

    2012-01-01

    Patient-reported outcome (PRO) questionnaires assess topics a patient can report about his or her own health. This includes symptoms (eg, nausea, fatigue, diarrhea, pain, or frequent urination), physical functioning (eg, difficulty climbing stairs or difficulty fastening buttons), and mental health (eg, anxiety, fear, or worry). Electronic PRO (ePRO) systems are used in oncology clinical care because of 1) their ability to enhance clinical care by flagging important symptoms and saving clinicians time; 2) the availability of standardized methods for creating and implementing PROs in clinics; and 3) the existence of user-friendly platforms for patient self-reporting like tablet computers and automated telephone surveys. Many ePRO systems can provide actionable links to clinical care such as summary reports in a patient's electronic medical record and real-time e-mail alerts to providers when patients report acute needs. This review presents 5 examples of ePRO systems currently in use in oncology practice. These systems support multiple clinical activities, including assessment of symptoms and toxicities related to chemotherapy and radiation, postoperative surveillance, and symptom management during palliative care and hospice. Patient self-reporting is possible both at clinical visits and between visits over the Internet or by telephone. The implementation of an ePRO system requires significant resources and expertise, as well as user training. ePRO systems enable regular monitoring of patient symptoms, function, and needs, and can enhance the efficiency and quality of care as well as communication with patients. PMID:22811342

  3. Imagery Assessment through Self-Report: What Do Imagery Questionnaires Measure?

    ERIC Educational Resources Information Center

    Hiscock, Merrill

    1978-01-01

    Examined imagery questionnaires and addressed issues of reliability, agreement among questionnaires, social desirability, and construct validity. The Betts and Gordon scales and the Paivio Individual Differences Questionnaire were examined. Reliability of the Paivio inventory was satisfactory and equivalent to other imagery questionnaires. Imagery…

  4. The Four-Dimensional Symptom Questionnaire (4DSQ): a validation study of a multidimensional self-report questionnaire to assess distress, depression, anxiety and somatization

    PubMed Central

    Terluin, Berend; van Marwijk, Harm WJ; Adèr, Herman J; de Vet, Henrica CW; Penninx, Brenda WJH; Hermens, Marleen LM; van Boeijen, Christine A; van Balkom, Anton JLM; van der Klink, Jac JL; Stalman, Wim AB

    2006-01-01

    Background The Four-Dimensional Symptom Questionnaire (4DSQ) is a self-report questionnaire that has been developed in primary care to distinguish non-specific general distress from depression, anxiety and somatization. The purpose of this paper is to evaluate its criterion and construct validity. Methods Data from 10 different primary care studies have been used. Criterion validity was assessed by comparing the 4DSQ scores with clinical diagnoses, the GPs' diagnosis of any psychosocial problem for Distress, standardised psychiatric diagnoses for Depression and Anxiety, and GPs' suspicion of somatization for Somatization. ROC analyses and logistic regression analyses were used to examine the associations. Construct validity was evaluated by investigating the inter-correlations between the scales, the factorial structure, the associations with other symptom questionnaires, and the associations with stress, personality and social functioning. The factorial structure of the 4DSQ was assessed through confirmatory factor analysis (CFA). The associations with other questionnaires were assessed with Pearson correlations and regression analyses. Results Regarding criterion validity, the Distress scale was associated with any psychosocial diagnosis (area under the ROC curve [AUC] 0.79), the Depression scale was associated with major depression (AUC = 0.83), the Anxiety scale was associated with anxiety disorder (AUC = 0.66), and the Somatization scale was associated with the GPs' suspicion of somatization (AUC = 0.65). Regarding the construct validity, the 4DSQ scales appeared to have considerable inter-correlations (r = 0.35-0.71). However, 30–40% of the variance of each scale was unique for that scale. CFA confirmed the 4-factor structure with a comparative fit index (CFI) of 0.92. The 4DSQ scales correlated with most other questionnaires measuring corresponding constructs. However, the 4DSQ Distress scale appeared to correlate with some other depression scales more

  5. Utility of Patient-Reported Outcome Instruments in Heart Failure.

    PubMed

    Kelkar, Anita A; Spertus, John; Pang, Peter; Pierson, Renee F; Cody, Robert J; Pina, Ileana L; Hernandez, Adrian; Butler, Javed

    2016-03-01

    Patient-reported outcomes (PRO) are defined as reports coming directly from patients about how they feel or function in relation to a health condition and its therapy. Although there are numerous compelling reasons why PRO could be an important help in clinical care, they have not evolved into clinical tools integrated into care. The purpose of this review is to assess existing PRO instruments for heart failure with respect to their psychometric properties and potential for use in clinical care. We performed a systematic search of articles published between July 2008 and January 2015 within the MEDLINE, PROMIS, PROQOLID, and Cochrane Library databases. Included instruments had to be developed and tested for heart failure and have had their development processes and psychometric properties described. A total of 31 instruments were identified, 9 of which met all inclusion criteria. After evaluating each remaining instrument in terms of psychometric and clinical criteria and symptom coverage, only 2 instruments-Minnesota Living with Heart Failure and Kansas City Cardiomyopathy questionnaire-met all evaluation criteria. Although clinically useful PRO instruments exist, increasing education to providers on the value and interpretability of PRO instruments, as well as a more streamlined approach to their implementation in the clinical setting is necessary. A clinical trial comparing the routine use of disease-specific PRO with clinical care could further support their incorporation into practice. PMID:26874386

  6. Postsecondary Student Outcomes: A Feasibility Study. Feasibility Report.

    ERIC Educational Resources Information Center

    Korb, Roslyn

    This report presents the findings from a study designed: (1) to determine the current availability and utility of student outcome statistics in the nation; and (2) to examine the feasibility and desirability of nationwide institutional reporting of student outcome data. Following an introductory section on the purposes of the report and the…

  7. Patient reported outcomes in hip arthroplasty registries.

    PubMed

    Paulsen, Aksel

    2014-05-01

    PROs are used increasingly in orthopedics and in joint registries, but still many aspects of use in this area have not been examined in depth. To be able to introduce PROs in the DHR in a scientific fashion, my studies were warranted; the feasibility of four often used PROs (OHS, HOOS, EQ-5D and SF-12) was examined in a registry context. Having the PROs in the target language is an absolute necessity, so I translated, cross-culturally adapted and validated a Danish language version of an often used PRO (OHS), since this PRO had no properly developed Danish language version. To minimize data loss and to maximize the data quality I validated our data capture procedure, an up to date AFP system, by comparing scannable, paper-based PROs, with manual single-key- and double-key entered data. To help further registry-PRO studies, I calculated the number of patients needed to discriminate between subgroups of age, sex, diagnosis, and prosthesis type for each of four often used PROs (OHS, HOOS, EQ-5D and SF-12), and to simplify the clinical interpretation of PRO scores and PRO change scores in PRO studies, I estimated MCII and PASS for two often used PROs (EQ-5D and HOOS). The feasibility study included 5,747 THA patients registered in the DHR, and I found only minor differences between the disease-specific and the generic PROs regarding ceiling and floor effects as well as discarded items. The HOOS, the OHS, the SF-12, and the EQ-5D are all appropriate PROs for administration in a hip registry. I found that group sizes from 51 to 1,566 were needed for subgroup analysis, depending on descriptive factors and choice of PRO. The AFP study included 200 THA patients (398 PROs, 4,875 items and 21,887 data fields), and gave excellent results provided use of highly structured questionnaires. OMR performed equally as well as manual double-key entering, and better than single-key entering. The PRO translation and validation study included 2,278 patients (and 212 patients for the test

  8. Patient reported outcome measures in neurogenic bladder

    PubMed Central

    Clark, Roderick

    2016-01-01

    Many interventions for neurogenic bladder patients are directed towards improving quality of life (QOL). Patient reported outcome measures (PROMs) are the primary method of evaluating QOL, and they provide an important quantification of symptoms which can’t be measured objectively. Our goal was to review general measurement principles, and identify and discuss PROMs relevant to neurogenic bladder patients. We identify two recent reviews of the state of the literature and updated the results with an additional Medline search up to September 1, 2015. Using the previous identified reviews, and our updated literature review, we identified 16 PROMs which are used for the assessment of QOL and symptoms in neurogenic bladder patients. Several are specifically designed for neurogenic bladder patients, such as the Qualiveen (for neurogenic bladder related QOL), and the Neurogenic Bladder Symptom Score (NBSS) (for neurogenic bladder symptoms). We also highlight general QOL measures for patients with multiple sclerosis (MS) and spinal cord injury (SCI) which include questions about bladder symptoms, and incontinence PROMs which are commonly used, but not specifically designed for neurogenic bladder patients. It is essential for clinicians and researchers with an interest in neurogenic bladder to be aware of the current PROMs, and to have a basic understanding of the principals of measurement in order to select the most appropriate one for their purpose. PMID:26904409

  9. Incomplete Reporting: Addressing the Prevalence of Outcome-Reporting Bias in Educational Research

    ERIC Educational Resources Information Center

    Trainor, Brian; Polanin, Joshua; Williams, Ryan; Pigott, Terri

    2015-01-01

    Outcome reporting bias refers to the practice of omitting from primary studies outcomes that were actually collected. When primary studies do not report on all the outcomes assessed, there is an incomplete understanding of a phenomenon that may be compounded when the study is included in a systematic review of research. Outcome reporting bias is…

  10. Outcome-Based Education. Final Report.

    ERIC Educational Resources Information Center

    Kearney, James M.

    This paper presents a summary of research on outcome-based education (OBE). The first section provides an overview of the evolution and history of OBE in the United States. Other outcome-based models are described in the second section. The third section reviews research on OBE and related concepts, including mastery learning, cooperative…

  11. The impact of patient preselection on reported IVF outcomes.

    PubMed

    Gleicher, Norbert; Kushnir, Vitaly A; Barad, David H

    2016-04-01

    We, in this manuscript, address the fact that increasing numbers of published studies in reproductive medicine selectively report outcomes for only favorably selected patients; while failing to note that, so reported outcome data,therefore, cannot be applied to unselected patient populations. Almost all favorablepatient selection methods, starting with prolonged embryo culture to blastocyst stage, have, thus, been widely misrepresented in the literature since they almost universally report outcomes only in reference to embryo transfer. These outcome reports, however, do not include outcomes for poorer prognosis patients who do not reach embryo transfer. Study outcomes are universally applicable only if performed in unselected patient populations and reported with reference point cycle start (intent to treat). All other studies greatly exaggerate clinical pregnancy and live birth rates if applied to general populations, unless specifically noting that they can be extrapolated only to women who reach embryo transfer. PMID:26861966

  12. Interpreting and reporting results based on patient-reported outcomes.

    PubMed

    Revicki, Dennis A; Erickson, Pennifer A; Sloan, Jeff A; Dueck, Amylou; Guess, Harry; Santanello, Nancy C

    2007-01-01

    This article deals with the incorporation of patient-reported outcomes (PROs) into clinical trials and focuses on issues associated with the interpretation and reporting of PRO data. The primary focus and context of this information relates to the evidentiary support and reporting for a labeling or advertising claim of a PRO benefit for a new or approved pharmaceutical product. This manuscript focuses on issues associated with assessing clinical significance and common pitfalls to avoid in presenting results related to PROs. Specifically, the questions addressed by this manuscript involve: What are the best methods to assess clinical significance for PROs? How should investigators present PRO data most effectively in a Food and Drug Administration (FDA) application? In labeling or in a scientific publication? Guidelines for interpreting clinical significance of PROs and for comprehensively reporting on the methods, measures and results of clinical trials that incorporate PROs are important for clinicians, regulatory agencies, and most of all to patients. Clear specifications for considering a finding on a PRO measure, as clinically meaningful, need to be determined by instrument developers and psychometricians; they need to be reported for all clinical trials involving PRO end points. Clinical trial reports need to be comprehensive, clear, and sufficient to enable any reader to understand the methods, PRO measures, statistical analysis, and results. PMID:17995470

  13. Patient-reported outcome measures in nonmelanoma skin cancer of the face: a systematic review.

    PubMed

    Bates, A S; Davis, C R; Takwale, A; Knepil, G J

    2013-06-01

    Nonmelanoma skin cancer (NMSC) is the most common malignancy in the western world, with an incidence of 98,000 in the U.K. Since 2009 the Department of Health (DoH) has collected patient-reported outcome measure (PROM) data following four common surgical procedures. However, a DoH PROM for NMSC does not exist. A systematic review of questionnaires published on patient concerns due to NMSC of the face was conducted. Keywords relevant to PROMs, NMSC and the facial region were comprehensively searched in medical databases. Inclusion criteria stipulated that questionnaires from relevant papers recruited patients with NMSC for both the item formulation and subsequent validation. Questionnaires were then discussed by a multispecialty skin cancer research team. Initially 2548 papers were found; after exclusion criteria were applied, 73 articles were retrieved. Four patient questionnaires for NMSC featured adequate development and validation according to the inclusion criteria. The Facial Skin Cancer Index (FSCI) was the only PROM specific to facial NMSC. Additional questionnaires identified included the Skin Cancer Quality of Life Impact Tool, Skindex, and Dermatology Life Quality Index. There is a scarcity of data relating to NMSC PROMs and appearance concerns. Only one questionnaire--the FSCI--was specific to patients with facial NMSC. We recommend nationally standardized data collection from patients with NMSC in order to create an evidence-based validated PROM for patients with facial skin cancer. PMID:23387431

  14. Patient-Reported Outcome Measures in Systemic Sclerosis (Scleroderma).

    PubMed

    Pellar, Russell E; Tingey, Theresa M; Pope, Janet Elizabeth

    2016-05-01

    Scleroderma (systemic sclerosis) is a rare autoimmune connective tissue disease that can damage multiple organs and reduce quality of life. Patient-reported outcome measures capture the patient's perspective. Some measures are specific to systemic sclerosis and others are general. Patient-reported outcomes in systemic sclerosis are important to aid in understanding the impact of systemic sclerosis on patients. PMID:27133491

  15. Psychometric Properties of the Self-Report Version of the Strengths and Difficulties Questionnaire in Korea

    PubMed Central

    Kim, Min-Hyuk; Min, Seongho

    2015-01-01

    Objective To examine the reliability and validity of the self-report Korean version of Strengths and Difficulties Questionnaire (SDQ-Kr) in the community sample. Methods The SDQ-Kr was administered to a large sample of school children and adolescents (n=2814) and youth attendees of a psychiatric clinic (n=385) aged 11-16 years. To examine temporal stability, the same questionnaire was administered to a subsample of 167 school youths five to six weeks after the initial assessment. To examine the reliability, we calculated Cronbach's alpha coefficients for internal consistency and Pearson's correlations for test-retest stability. In order to evaluate the factorial structure of the SDQ-Kr items, we conducted an exploratory factor analysis (EFA) with varimax rotation. Finally, discriminant validity was examined by using receiver operating characteristic (ROC) curves employing the area under the curve (AUC) as an index of discriminant ability. Results Although the internal consistency of some subscales of the SDQ-Kr was somewhat less satisfactory (alpha coefficients; 0.28-0.54) than the English original, coefficients for the total difficulties scores approached sufficient levels (coefficients; 0.69). Other psychometric properties including discriminant validity (AUC for total difficulties and four subscales >0.7) were comparable to those obtained in other language studies. Conclusion The self-report SDQ-Kr exhibited a low level of reliability, indicating that some items need to be further evaluated and revised to improve the psychometric properties. We suggest that the total difficulties score could be used with more confidence for screening possible mental health problems in youths. PMID:26508960

  16. [Patient-reported and patient-weighted outcomes in ophthalmology].

    PubMed

    Scheibler, F; Finger, R P; Grosselfinger, R; Dintsios, C-M

    2010-03-01

    Considering patients' values and preferences in comparative effectiveness research (CER) is one of the main challenges in ophthalmology (value-based medicine). This article defines core terms in CER. The concept of patient-relevant (or patient-important) outcomes is distinguished from patient-reported outcomes (PRO) by means of examples in the field of ophthalmology. In order to be able to give a consistant recommendation if an intervention leads to conflicting results for different outcomes (trade-off), a ranking of outcomes will be necessary. Examples of studies in glaucoma patients are provided that demonstrate the possibilities of ranking of outcomes based on patient preferences. PMID:20024566

  17. Critical Limb Ischemia: Reporting Outcomes and Quality

    PubMed Central

    2012-01-01

    The impetus to pursue quality in limb salvage is high in the current economic environment. This has been spurred on by the diffusion of multiple technologies, the lack of well-defined cost-effectiveness benchmarks, and the paucity of process and structure benchmarks. Furthermore, no national database exists to capture current activity and trends, and lead structure and process changes that could analyze outcomes and improve standards in peripheral interventions for limb salvage. This manuscript examines the challenges in measuring outcomes and quality in limb salvage and explores the components necessary for ensuring quality in limb salvage interventions. PMID:23342183

  18. Symptoms of depression as reported by Norwegian adolescents on the Short Mood and Feelings Questionnaire

    PubMed Central

    Lundervold, Astri J.; Breivik, Kyrre; Posserud, Maj-Britt; Stormark, Kjell Morten; Hysing, Mari

    2013-01-01

    The present study investigated sex-differences in reports of depressive symptoms on a Norwegian translation of the short version of the Mood and Feelings Questionnaire (SMFQ). The sample comprised 9702 Norwegian adolescents (born 1993–1995, 54.9% girls), mainly attending highschool. A set of statistical analyses were run to investigate the dimensionality of the SMFQ. Girls scored significantly higher than boys on the SMFQ and used the most severe response-category far more frequently. Overall, the statistical analyses supported the essential unidimensionality of SMFQ. However, the items with the highest loadings according to the bifactor analysis, reflecting problems related to tiredness, restlessness and concentration difficulties, indicated that some of the symptoms may both be independent of and part of the symptomatology of depression. Measurement invariance analysis showed that girls scored slightly higher on some items when taking the latent variable into account; girls had a lower threshold for reporting mood problems and problems related to tiredness than boys, who showed a marginally lower threshold for reporting that no-one loved them. However, the effect on the total SMFQ score was marginal, supporting the use of the Norwegian translation of SMFQ as a continuous variable in further studies of adolescents. PMID:24062708

  19. Symptoms of depression as reported by Norwegian adolescents on the Short Mood and Feelings Questionnaire.

    PubMed

    Lundervold, Astri J; Breivik, Kyrre; Posserud, Maj-Britt; Stormark, Kjell Morten; Hysing, Mari

    2013-01-01

    The present study investigated sex-differences in reports of depressive symptoms on a Norwegian translation of the short version of the Mood and Feelings Questionnaire (SMFQ). The sample comprised 9702 Norwegian adolescents (born 1993-1995, 54.9% girls), mainly attending highschool. A set of statistical analyses were run to investigate the dimensionality of the SMFQ. Girls scored significantly higher than boys on the SMFQ and used the most severe response-category far more frequently. Overall, the statistical analyses supported the essential unidimensionality of SMFQ. However, the items with the highest loadings according to the bifactor analysis, reflecting problems related to tiredness, restlessness and concentration difficulties, indicated that some of the symptoms may both be independent of and part of the symptomatology of depression. Measurement invariance analysis showed that girls scored slightly higher on some items when taking the latent variable into account; girls had a lower threshold for reporting mood problems and problems related to tiredness than boys, who showed a marginally lower threshold for reporting that no-one loved them. However, the effect on the total SMFQ score was marginal, supporting the use of the Norwegian translation of SMFQ as a continuous variable in further studies of adolescents. PMID:24062708

  20. Institutional Outcomes Report, 2002-2003.

    ERIC Educational Resources Information Center

    William Rainey Harper Coll., Palatine, IL. Office of Planning and Research.

    This document presents the institutional outcomes for 2002-2003 for William Rainey Harper College. The document begins with the Presidents Introduction, which includes a list of accomplishments of the college. Some of these success are: (1) 90% retention rates for students involved in retention services and programs; (2) achieving a hiring…

  1. Advances in Patient-Reported Outcomes: The NIH PROMIS(®) Measures.

    PubMed

    Broderick, Joan E; DeWitt, Esi Morgan; Rothrock, Nan; Crane, Paul K; Forrest, Christopher B

    2013-01-01

    Patient-reported outcomes (PRO) are questionnaire measures of patients' symptoms, functioning, and health-related quality of life. They are designed to provide important clinical information that generally cannot be captured with objective medical testing. In 2004, the National Institutes of Health launched a research initiative to improve the clinical research enterprise by developing state-of-the-art PROs. The NIH Patient-Reported Outcomes Measurement System (PROMIS) and Assessment Center are the products of that initiative. Adult, pediatric, and parent-proxy item banks have been developed by using contemporary psychometric methods, yielding rapid, accurate measurements. PROMIS currently provides tools for assessing physical, mental, and social health using short-form and computer-adaptive testing methods. The PROMIS tools are being adopted for use in clinical trials and translational research. They are also being introduced in clinical medicine to assess a broad range of disease outcomes. Recent legislative developments in the United States support greater efforts to include patients' reports of health experience in order to evaluate treatment outcomes, engage in shared decision-making, and prioritize the focus of treatment. PROs have garnered increased attention by the Food and Drug Administration (FDA) for evaluating drugs and medical devices. Recent calls for comparative effectiveness research favor inclusion of PROs. PROs could also potentially improve quality of care and disease outcomes, provide patient-centered assessment for comparative effectiveness research, and enable a common metric for tracking outcomes across providers and medical systems. PMID:25848562

  2. Toward Ensuring Health Equity: Readability and Cultural Equivalence of OMERACT Patient-reported Outcome Measures

    PubMed Central

    Petkovic, Jennifer; Epstein, Jonathan; Buchbinder, Rachelle; Welch, Vivian; Rader, Tamara; Lyddiatt, Anne; Clerehan, Rosemary; Christensen, Robin; Boonen, Annelies; Goel, Niti; Maxwell, Lara J.; Toupin-April, Karine; De Wit, Maarten; Barton, Jennifer; Flurey, Caroline; Jull, Janet; Barnabe, Cheryl; Sreih, Antoine G.; Campbell, Willemina; Pohl, Christoph; Duruöz, Mehmet Tuncay; Singh, Jasvinder A.; Tugwell, Peter S.; Guillemin, Francis

    2016-01-01

    Objective The goal of the Outcome Measures in Rheumatology (OMERACT) 12 (2014) equity working group was to determine whether and how comprehensibility of patient-reported outcome measures (PROM) should be assessed, to ensure suitability for people with low literacy and differing cultures. Methods The English, Dutch, French, and Turkish Health Assessment Questionnaires and English and French Osteoarthritis Knee and Hip Quality of Life questionnaires were evaluated by applying 3 readability formulas: Flesch Reading Ease, Flesch-Kincaid grade level, and Simple Measure of Gobbledygook; and a new tool, the Evaluative Linguistic Framework for Questionnaires, developed to assess text quality of questionnaires. We also considered a study assessing cross-cultural adaptation with/without back-translation and/or expert committee. The results of this preconference work were presented to the equity working group participants to gain their perspectives on the importance of comprehensibility and cross-cultural adaptation for PROM. Results Thirty-one OMERACT delegates attended the equity session. Twenty-six participants agreed that PROM should be assessed for comprehensibility and for use of suitable methods (4 abstained, 1 no). Twenty-two participants agreed that cultural equivalency of PROM should be assessed and suitable methods used (7 abstained, 2 no). Special interest group participants identified challenges with cross-cultural adaptation including resources required, and suggested patient involvement for improving translation and adaptation. Conclusion Future work will include consensus exercises on what methods are required to ensure PROM are appropriate for people with low literacy and different cultures. PMID:26077410

  3. Evaluating the quality of pain management in a hospital setting: testing the psychometric properties of the Icelandic version of the revised American Pain Society patient outcome questionnaire.

    PubMed

    Zoëga, Sigridur; Ward, Sandra; Gunnarsdottir, Sigridur

    2014-03-01

    Pain management is an important aspect of providing quality health care, and monitoring patient-related outcomes is a recommended quality improvement practice. Valid and reliable tools are needed for this purpose. The American Pain Society Patient Outcome Questionnaire (APS-POQ) is widely used to measure quality of pain management. The APS-POQ was recently revised to reflect advances in pain management. The purpose of this study was to test the psychometric properties of the revised version in Icelandic patients in the hospital setting. The questionnaire was translated according to an adaptation of Brislin's model. Data were collected from 143 patients on 23 wards in a university hospital. Participants were ≥ 18 years old, hospitalized for >24 hours, alert, not too ill to participate, and in pain ≥ 1 on a 0-10 scale in the past 24 hours. Mean (SD) age was 66 (18) years, 51.4% were women, 48.6% men. Principal component analysis with varimax rotation confirmed a five-component structure, but four items lowered reliability and were removed from the scales. The final version consists of four components, with Cronbach α >.70, explaining 64.2% of the variance. Participants had little difficulty in answering the questionnaire, but two additional items about participation in decisions and pain medications were added in response to patients' comments and suggestions. Administering the Icelandic version of the APS-POQ-R was found to be feasible, and the questionnaire has acceptable construct validity and reliability. The results support the use of the APS-POQ-R-I to evaluate the quality of pain management in hospitals in Iceland. PMID:23318415

  4. Development and Validation of a Self-Report Measure of Mentalizing: The Reflective Functioning Questionnaire

    PubMed Central

    Fonagy, Peter; Luyten, Patrick; Moulton-Perkins, Alesia; Lee, Ya-Wen; Warren, Fiona; Howard, Susan; Ghinai, Rosanna; Fearon, Pasco; Lowyck, Benedicte

    2016-01-01

    Reflective functioning or mentalizing is the capacity to interpret both the self and others in terms of internal mental states such as feelings, wishes, goals, desires, and attitudes. This paper is part of a series of papers outlining the development and psychometric features of a new self-report measure, the Reflective Functioning Questionnaire (RFQ), designed to provide an easy to administer self-report measure of mentalizing. We describe the development and initial validation of the RFQ in three studies. Study 1 focuses on the development of the RFQ, its factor structure and construct validity in a sample of patients with Borderline Personality Disorder (BPD) and Eating Disorder (ED) (n = 108) and normal controls (n = 295). Study 2 aims to replicate these findings in a fresh sample of 129 patients with personality disorder and 281 normal controls. Study 3 addresses the relationship between the RFQ, parental reflective functioning and infant attachment status as assessed with the Strange Situation Procedure (SSP) in a sample of 136 community mothers and their infants. In both Study 1 and 2, confirmatory factor analyses yielded two factors assessing Certainty (RFQ_C) and Uncertainty (RFQ_U) about the mental states of self and others. These two factors were relatively distinct, invariant across clinical and non-clinical samples, had satisfactory internal consistency and test–retest stability, and were largely unrelated to demographic features. The scales discriminated between patients and controls, and were significantly and in theoretically predicted ways correlated with measures of empathy, mindfulness and perspective-taking, and with both self-reported and clinician-reported measures of borderline personality features and other indices of maladaptive personality functioning. Furthermore, the RFQ scales were associated with levels of parental reflective functioning, which in turn predicted infant attachment status in the SSP. Overall, this study lends

  5. Interformat Reliability of Digital Psychiatric Self-Report Questionnaires: A Systematic Review

    PubMed Central

    Hursti, Timo

    2014-01-01

    Background Research on Internet-based interventions typically use digital versions of pen and paper self-report symptom scales. However, adaptation into the digital format could affect the psychometric properties of established self-report scales. Several studies have investigated differences between digital and pen and paper versions of instruments, but no systematic review of the results has yet been done. Objective This review aims to assess the interformat reliability of self-report symptom scales used in digital or online psychotherapy research. Methods Three databases (MEDLINE, Embase, and PsycINFO) were systematically reviewed for studies investigating the reliability between digital and pen and paper versions of psychiatric symptom scales. Results From a total of 1504 publications, 33 were included in the review, and interformat reliability of 40 different symptom scales was assessed. Significant differences in mean total scores between formats were found in 10 of 62 analyses. These differences were found in just a few studies, which indicates that the results were due to study effects and sample effects rather than unreliable instruments. The interformat reliability ranged from r=.35 to r=.99; however, the majority of instruments showed a strong correlation between format scores. The quality of the included studies varied, and several studies had insufficient power to detect small differences between formats. Conclusions When digital versions of self-report symptom scales are compared to pen and paper versions, most scales show high interformat reliability. This supports the reliability of results obtained in psychotherapy research on the Internet and the comparability of the results to traditional psychotherapy research. There are, however, some instruments that consistently show low interformat reliability, suggesting that these conclusions cannot be generalized to all questionnaires. Most studies had at least some methodological issues with insufficient

  6. Reported Outcome Measures in Degenerative Cervical Myelopathy: A Systematic Review

    PubMed Central

    McHugh, Maire; Elgheriani, Ali; Kolias, Angelos G.; Tetreault, Lindsay A.; Hutchinson, Peter J. A.; Fehlings, Michael G.; Kotter, Mark R. N.

    2016-01-01

    Objective Degenerative cervical myelopathy [DCM] is a disabling and increasingly prevalent group of diseases. Heterogeneous reporting of trial outcomes limits effective inter-study comparison and optimisation of treatment. This is recognised in many fields of healthcare research. The present study aims to assess the heterogeneity of outcome reporting in DCM as the premise for the development of a standardised reporting set. Methods A systematic review of MEDLINE and EMBASE databases, registered with PROSPERO (CRD42015025497) was conducted in accordance with PRISMA guidelines. Full text articles in English, with >50 patients (prospective) or >200 patients (retrospective), reporting outcomes of DCM were eligible. Results 108 studies, assessing 23,876 patients, conducted world-wide, were identified. Reported outcome themes included function (reported by 97, 90% of studies), complications (reported by 56, 52% of studies), quality of life (reported by 31, 29% of studies), pain (reported by 29, 27% of studies) and imaging (reported by 59, 55% of studies). Only 7 (6%) studies considered all of domains in a single publication. All domains showed variability in reporting. Conclusions Significant heterogeneity exists in the reporting of outcomes in DCM. The development of a consensus minimum dataset will facilitate future research synthesis. PMID:27482710

  7. The Perceived Deficits Questionnaire

    PubMed Central

    Binder, Allison; Nikelshpur, Olga M.; Chiaravalloti, Nancy; DeLuca, John

    2016-01-01

    Background: Cognitive dysfunction affects approximately 43% to 70% of individuals with multiple sclerosis (MS) and is an important determinant of several functional outcomes in MS and quality of life. Brief neuropsychological test batteries have been developed specifically for use in MS and are widely used to aid clinicians in assessing levels of cognitive impairment in MS. Neuropsychologists and neurologists also frequently use briefer screening measures, such as the Perceived Deficits Questionnaire (PDQ), to assist in determining whether a more extensive neuropsychological evaluation is warranted. However, despite the ease of such measures, the relationship between self-report and objective cognitive impairment has been inconsistent, at best. Moreover, factors such as depression, fatigue, anxiety, and personality have been found to be more related to reports of cognitive difficulties. The purpose of the present study was to clarify the relationship between subjective cognitive concerns and objective cognitive impairment while accounting for related symptoms. Methods: We examined the association of self-reported cognitive concerns on the PDQ with objective cognitive measures, as well as depression, anxiety, fatigue, and self-efficacy. Results: There was no relationship between self-reported cognitive concerns and objective performance. Rather, reports on the PDQ were more correlated with reports of depression, anxiety, fatigue, and self-efficacy. Conclusions: Depression and poor self-efficacy can contribute to reports of cognitive difficulties. Effective treatment to improve these factors seems warranted given the impact of perceived cognitive impairment on outcomes in MS and the potential for more accurate self-reports. PMID:27551243

  8. The Derivation of Job Compensation Index Values from the Position Analysis Questionnaire (PAQ). Report No. 6.

    ERIC Educational Resources Information Center

    McCormick, Ernest J.; And Others

    The study deals with the job component method of establishing compensation rates. The basic job analysis questionnaire used in the study was the Position Analysis Questionnaire (PAQ) (Form B). On the basis of a principal components analysis of PAQ data for a large sample (2,688) of jobs, a number of principal components (job dimensions) were…

  9. The Use of the Position Analysis Questionnaire (PAQ) for Establishing the Job Component Validity of Tests. Report No. 5. Final Report.

    ERIC Educational Resources Information Center

    McCormick, Ernest J.; And Others

    The Position Analysis Questionnaire (PAQ), a structured job analysis questionnaire that provides for the analysis of individual jobs in terms of each of 187 job elements, was used to establish the job component validity of certain commercially-available vocational aptitude tests. Prior to the general analyses reported here, a statistical analysis…

  10. Examining the validity of the adapted Alabama Parenting Questionnaire-Parent Global Report Version.

    PubMed

    Maguin, Eugene; Nochajski, Thomas H; De Wit, David J; Safyer, Andrew

    2016-05-01

    The purpose of the present study was to comprehensively examine the validity of an adapted version of the parent global report form of the Alabama Parenting Questionnaire (APQ) with respect to its factor structure, relationships with demographic and response style covariates, and differential item functioning (DIF). The APQ was adapted by omitting the corporal punishment and the other discipline items. The sample consisted of 674 Canadian and United States families having a 9- to 12-year-old child and at least 1 parent figure who had received treatment within the past 5 years for alcohol problems or met criteria for alcohol abuse or dependence. The primary parent in each family completed the APQ. The 4-factor CFA model of the 4 published scales used and the 3-factor CFA model of those scales from prior research were rejected. Exploratory structural equation modeling was then used. The final 3-factor model combined the author-defined Involvement and Positive Parenting scales and retained the original Poor Monitoring/Supervision and Inconsistent Discipline scales. However, there were substantial numbers of moderate magnitude cross-loadings and large magnitude residual covariances. Differential item functioning (DIF) was observed for a number of APQ items. Controlling for DIF, response style and demographic variables were related significantly to the factors. (PsycINFO Database Record PMID:26348028

  11. Internal consistency of the self-reporting questionnaire-20 in occupational groups

    PubMed Central

    Santos, Kionna Oliveira Bernardes; Carvalho, Fernando Martins; de Araújo, Tânia Maria

    2016-01-01

    ABSTRACT OBJECTIVE To assess the internal consistency of the measurements of the Self-Reporting Questionnaire (SRQ-20) in different occupational groups. METHODS A validation study was conducted with data from four surveys with groups of workers, using similar methods. A total of 9,959 workers were studied. In all surveys, the common mental disorders were assessed via SRQ-20. The internal consistency considered the items belonging to dimensions extracted by tetrachoric factor analysis for each study. Item homogeneity assessment compared estimates of Cronbach’s alpha (KD-20), the alpha applied to a tetrachoric correlation matrix and stratified Cronbach’s alpha. RESULTS The SRQ-20 dimensions showed adequate values, considering the reference parameters. The internal consistency of the instrument items, assessed by stratified Cronbach’s alpha, was high (> 0.80) in the four studies. CONCLUSIONS The SRQ-20 showed good internal consistency in the professional categories evaluated. However, there is still a need for studies using alternative methods and additional information able to refine the accuracy of latent variable measurement instruments, as in the case of common mental disorders. PMID:27007682

  12. Self-Report of Tobacco Use Status: Comparison of Paper-Based Questionnaire, Online Questionnaire, and Direct Face-to-Face Interview—Implications for Meaningful Use

    PubMed Central

    Murad, Mohammad Hassan; Hays, J. Taylor; Newcomb, Richard D.; Molella, Robin G.; Cha, Stephen S.; Hagen, Philip T.

    2014-01-01

    Abstract Identifying tobacco use status is essential to address use and provide resources to help patients quit. Being able to collect this information in an electronic format will become increasingly important, as the Centers for Medicare and Medicaid Services has included the assessment of tobacco use as part of its Stage 1 Meaningful Use criteria. The objective was to compare the accuracy of online vs. paper assessment methods to ascertain cigarette smoking status using a face-to-face structured interview as the gold standard. This was a retrospective analysis of a stratified opportunity sample of consecutive patients, reporting in 2010 for a periodic health evaluation, who completed either a scannable paper-based form or an online questionnaire and underwent a standardized rooming interview. Compared with face-to-face structured interview, the overall observed agreement and kappa coefficient for both methods combined (paper and online) were 97.7% and 0.69 (95% confidence interval (CI) 0.51–0.86) . For the online form they were 97.4% and 0.61 (95% CI 0.33–0.90), and for the paper form they were 97.9% and 0.75 (95% CI 0.54–0.96). There was no statistically significant difference in agreement between the online and paper-based methods (P=0.76) compared with a face-to-face structured interview. Online assessment of tobacco use status is as accurate as a paper questionnaire, and both methods have greater than 97% observed agreement with a face-to-face structured interview. The use of online assessment of tobacco use status has several advantages and more widespread use should be explored. (Population Health Management 2014;17:185–189) PMID:24476559

  13. Self-report of tobacco use status: comparison of paper-based questionnaire, online questionnaire, and direct face-to-face interview--implications for meaningful use.

    PubMed

    Steffen, Mark W; Murad, Mohammad Hassan; Hays, J Taylor; Newcomb, Richard D; Molella, Robin G; Cha, Stephen S; Hagen, Philip T

    2014-06-01

    Identifying tobacco use status is essential to address use and provide resources to help patients quit. Being able to collect this information in an electronic format will become increasingly important, as the Centers for Medicare and Medicaid Services has included the assessment of tobacco use as part of its Stage 1 Meaningful Use criteria. The objective was to compare the accuracy of online vs. paper assessment methods to ascertain cigarette smoking status using a face-to-face structured interview as the gold standard. This was a retrospective analysis of a stratified opportunity sample of consecutive patients, reporting in 2010 for a periodic health evaluation, who completed either a scannable paper-based form or an online questionnaire and underwent a standardized rooming interview. Compared with face-to-face structured interview, the overall observed agreement and kappa coefficient for both methods combined (paper and online) were 97.7% and 0.69 (95% confidence interval (CI) 0.51-0.86) . For the online form they were 97.4% and 0.61 (95% CI 0.33-0.90), and for the paper form they were 97.9% and 0.75 (95% CI 0.54-0.96). There was no statistically significant difference in agreement between the online and paper-based methods (P=0.76) compared with a face-to-face structured interview. Online assessment of tobacco use status is as accurate as a paper questionnaire, and both methods have greater than 97% observed agreement with a face-to-face structured interview. The use of online assessment of tobacco use status has several advantages and more widespread use should be explored. PMID:24476559

  14. Usefulness of the rivermead postconcussion symptoms questionnaire and the trail-making test for outcome prediction in patients with mild traumatic brain injury.

    PubMed

    de Guise, Elaine; Bélanger, Sara; Tinawi, Simon; Anderson, Kirsten; LeBlanc, Joanne; Lamoureux, Julie; Audrit, Hélène; Feyz, Mitra

    2016-01-01

    The aim of the study was to determine if the Rivermead Postconcussion Symptoms Questionnaire (RPQ) is a better tool for outcome prediction than an objective neuropsychological assessment following mild traumatic brain injury (mTBI). The study included 47 patients with mTBI referred to an outpatient rehabilitation clinic. The RPQ and a brief neuropsychological battery were performed in the first few days following the trauma. The outcome measure used was the Mayo-Portland Adaptability Inventory-4 (MPAI-4) which was completed within the first 3 months. The only variable associated with results on the MPAI-4 was the RPQ score (p < .001). The predictive outcome model including age, education, and the results of the Trail-Making Test-Parts A and B (TMT) had a pseudo-R(2) of .02. When the RPQ score was added, the pseudo-R(2) climbed to .19. This model indicates that the usefulness of the RPQ score and the TMT in predicting moderate-to-severe limitations, while controlling for confounders, is substantial as suggested by a significant increase in the model chi-square value, delta (1df) = 6.517, p < .001. The RPQ and the TMT provide clinicians with a brief and reliable tool for predicting outcome functioning and can help target the need for further intervention and rehabilitation following mTBI. PMID:26571267

  15. Knotted stents: Case report and outcome analysis

    PubMed Central

    Lee, Ha Na; Hwang, Hokyeong

    2015-01-01

    A knotted ureteral stent is an extremely rare condition, with fewer than 20 cases reported in the literature; however, it is difficult to treat. We report a case in which a folded Terumo guidewire was successfully used to remove a knotted stent percutaneously without anesthesia. We also review the current literature on predisposing factors and management strategies for knotted ureteral stents. PMID:25964843

  16. The disabilities of the arm, shoulder and hand (DASH) outcome questionnaire: reliability and validity of the Swedish version evaluated in 176 patients.

    PubMed

    Atroshi, I; Gummesson, C; Andersson, B; Dahlgren, E; Johansson, A

    2000-12-01

    The disabilities of the arm, shoulder and hand (DASH) questionnaire is a self-administered region-specific outcome instrument developed to measure upper-extremity disability and symptoms. The DASH consists mainly of a 30-item disability/symptom scale. We performed cross-cultural adaptation of the DASH to Swedish, using a process that included double forward and backward translations, expert and lay review, as well as field-testing to achieve linguistic and conceptual equivalence. The Swedish version's reliability and validity were then evaluated in 176 patients with upper-extremity conditions. The patients completed the DASH and SF-12 generic health questionnaire before elective surgery or physical therapy. Internal consistency of the DASH was high (Cronbach alpha 0.96). Test-retest reliability, evaluated in a subgroup of 67 patients who completed the DASH on two occasions, with a median interval of 7 days, was excellent (intraclass correlation coefficient 0.92). Construct validity was shown by a positive correlation of DASH scores with the SF-12 scores (worse upper-extremity disability correlating with worse general health), stronger correlation with the SF-12 physical than with the mental health component, correlation of worse DASH scores with worse self-rated global health, and ability to discriminate among conditions known to differ in severity. The Swedish version of the DASH is a reliable and valid instrument that can provide a standardized measure of patient-centered outcomes in upper-extremity musculoskeletal conditions. PMID:11145390

  17. Can the painDETECT Questionnaire score and MRI help predict treatment outcome in rheumatoid arthritis: protocol for the Frederiksberg hospital's Rheumatoid Arthritis, pain assessment and Medical Evaluation (FRAME-cohort) study

    PubMed Central

    Rifbjerg-Madsen, Signe; Christensen, Anton Wulf; Boesen, Mikael; Christensen, Robin; Danneskiold-Samsøe, Bente; Bliddal, Henning; Bartels, Else Marie; Locht, Henning; Amris, Kirstine

    2014-01-01

    Introduction Pain in rheumatoid arthritis (RA) is traditionally considered to be of inflammatory origin. Despite better control of inflammation, some patients still report pain as a significant concern, even when being in clinical remission. This suggests that RA may prompt central sensitisation—one aspect of chronic pain. In contrast, other patients report good treatment response, although imaging shows signs of inflammation, which could indicate a possible enhancement of descending pain inhibitory mechanisms. When assessing disease activity in patients with central sensitisation, the commonly used disease activity scores (eg, DAS28-CRP (C reactive protein)) will yield constant high total scores due to high tender joint count and global health assessments, whereas MRI provides an isolated estimate of inflammation. The objective of this study is, in patients with RA initiating anti-inflammatory treatment, to explore the prognostic value of a screening questionnaire for central sensitisation, hand inflammation assessed by conventional MRI, and the interaction between them regarding treatment outcome evaluated by clinical status (DAS28-CRP). For the purpose of further exploratory analyses, dynamic contrast-enhanced MRI (DCE-MRI) is performed. Method and analysis The painDETECT Questionnaire (PDQ), originally developed to screen for a neuropathic pain component, is applied to indicate the presence of central sensitisation. Adults diagnosed with RA are included when either (A) initiating disease-modifying antirheumatic drug treatment, or (B) initiating or switching to biological therapy. We anticipate that 100 patients will be enrolled, tested and reassessed after 4 months of treatment. Data collection includes Clinical data, conventional MRI, DCE-MRI, blood samples and patient-reported outcomes. Ethics and dissemination This study aims at supporting rheumatologists to define strategies to reach optimal treatment outcomes in patients with RA based on chronic pain

  18. Conceptual and methodological advances in child-reported outcomes measurement

    PubMed Central

    Bevans, Katherine B; Riley, Anne W; Moon, JeanHee; Forrest, Christopher B

    2011-01-01

    Increasingly, clinical, pharmaceutical and translational research studies use patient-reported outcomes as primary and secondary end points. Obtaining this type of information from children themselves is now possible, but effective assessment requires developmentally sensitive conceptual models of child health and an appreciation for the rapid change in children’s cognitive capacities. To overcome these barriers, outcomes researchers have capitalized on innovations in modern measurement theory, qualitative methods for instrument development and new computerized technologies to create reliable and valid methods for obtaining self-reported health data among 8–17-year-old children. This article provides a developmentally focused framework for selecting child-report health assessment instruments. Several generic health-related quality of life instruments and the assessment tools developed by the NIH-sponsored Patient-Reported Outcome Measurement Information System network are discussed to exemplify advances in the measurement of children’s self-reported health, illness, wellbeing and quality of life. PMID:20715916

  19. The Bipolar II Depression Questionnaire: A Self-Report Tool for Detecting Bipolar II Depression.

    PubMed

    Leung, Chi Ming; Yim, Chi Lap; Yan, Connie T Y; Chan, Cheuk Chi; Xiang, Yu-Tao; Mak, Arthur D P; Fok, Marcella Lei-Yee; Ungvari, Gabor S

    2016-01-01

    Bipolar II (BP-II) depression is often misdiagnosed as unipolar (UP) depression, resulting in suboptimal treatment. Tools for differentiating between these two types of depression are lacking. This study aimed to develop a simple, self-report screening instrument to help distinguish BP-II depression from UP depressive disorder. A prototype BP-II depression questionnaire (BPIIDQ-P) was constructed following a literature review, panel discussions and a field trial. Consecutively assessed patients with a diagnosis of depressive disorder or BP with depressive episodes completed the BPIIDQ-P at a psychiatric outpatient clinic in Hong Kong between October and December 2013. Data were analyzed using discriminant analysis and logistic regression. Of the 298 subjects recruited, 65 (21.8%) were males and 233 (78.2%) females. There were 112 (37.6%) subjects with BP depression [BP-I = 42 (14.1%), BP-II = 70 (23.5%)] and 182 (62.4%) with UP depression. Based on family history, age at onset, postpartum depression, episodic course, attacks of anxiety, hypersomnia, social phobia and agoraphobia, the 8-item BPIIDQ-8 was constructed. The BPIIDQ-8 differentiated subjects with BP-II from those with UP depression with a sensitivity/specificity of 0.75/0.63 for the whole sample and 0.77/0.72 for a female subgroup with a history of childbirth. The BPIIDQ-8 can differentiate BP-II from UP depression at the secondary care level with satisfactory to good reliability and validity. It has good potential as a screening tool for BP-II depression in primary care settings. Recall bias, the relatively small sample size, and the high proportion of females in the BP-II sample limit the generalization of the results. PMID:26963908

  20. The Bipolar II Depression Questionnaire: A Self-Report Tool for Detecting Bipolar II Depression

    PubMed Central

    Leung, Chi Ming; Yim, Chi Lap; Yan, Connie T. Y.; Chan, Cheuk Chi; Xiang, Yu-Tao; Mak, Arthur D. P.; Fok, Marcella Lei-Yee; Ungvari, Gabor S.

    2016-01-01

    Bipolar II (BP-II) depression is often misdiagnosed as unipolar (UP) depression, resulting in suboptimal treatment. Tools for differentiating between these two types of depression are lacking. This study aimed to develop a simple, self-report screening instrument to help distinguish BP-II depression from UP depressive disorder. A prototype BP-II depression questionnaire (BPIIDQ-P) was constructed following a literature review, panel discussions and a field trial. Consecutively assessed patients with a diagnosis of depressive disorder or BP with depressive episodes completed the BPIIDQ-P at a psychiatric outpatient clinic in Hong Kong between October and December 2013. Data were analyzed using discriminant analysis and logistic regression. Of the 298 subjects recruited, 65 (21.8%) were males and 233 (78.2%) females. There were 112 (37.6%) subjects with BP depression [BP-I = 42 (14.1%), BP-II = 70 (23.5%)] and 182 (62.4%) with UP depression. Based on family history, age at onset, postpartum depression, episodic course, attacks of anxiety, hypersomnia, social phobia and agoraphobia, the 8-item BPIIDQ-8 was constructed. The BPIIDQ-8 differentiated subjects with BP-II from those with UP depression with a sensitivity/specificity of 0.75/0.63 for the whole sample and 0.77/0.72 for a female subgroup with a history of childbirth. The BPIIDQ-8 can differentiate BP-II from UP depression at the secondary care level with satisfactory to good reliability and validity. It has good potential as a screening tool for BP-II depression in primary care settings. Recall bias, the relatively small sample size, and the high proportion of females in the BP-II sample limit the generalization of the results. PMID:26963908

  1. The child play behavior and activity questionnaire: a parent-report measure of childhood gender-related behavior in China.

    PubMed

    Yu, Lu; Winter, Sam; Xie, Dong

    2010-06-01

    Boys and girls establish relatively stable gender stereotyped behavior patterns by middle childhood. Parent-report questionnaires measuring children's gender-related behavior enable researchers to conduct large-scale screenings of community samples of children. For school-aged children, two parent-report instruments, the Child Game Participation Questionnaire (CGPQ) and the Child Behavior and Attitude Questionnaire (CBAQ), have long been used for measuring children's sex-dimorphic behaviors in Western societies, but few studies have been conducted using these measures for Chinese populations. The current study aimed to empirically examine and modify the two instruments for their applications to Chinese society. Parents of 486 Chinese boys and 417 Chinese girls (6-12 years old) completed a questionnaire comprising items from the CGPQ and CBAQ, and an additional 14 items specifically related to Chinese gender-specific games. Items revealing gender differences in a Chinese sample were identified and used to construct a Child Play Behavior and Activity Questionnaire (CPBAQ). Four new scales were generated through factor analysis: a Gender Scale, a Girl Typicality Scale, a Boy Typicality Scale, and a Cross-Gender Scale (CGS). These scales had satisfactory internal reliabilities and large effect sizes for gender. The CPBAQ is believed to be a promising instrument for measuring children's gender-related behavior in China. PMID:18719986

  2. The Child Play Behavior and Activity Questionnaire: A Parent-Report Measure of Childhood Gender-Related Behavior in China

    PubMed Central

    Winter, Sam; Xie, Dong

    2008-01-01

    Boys and girls establish relatively stable gender stereotyped behavior patterns by middle childhood. Parent-report questionnaires measuring children’s gender-related behavior enable researchers to conduct large-scale screenings of community samples of children. For school-aged children, two parent-report instruments, the Child Game Participation Questionnaire (CGPQ) and the Child Behavior and Attitude Questionnaire (CBAQ), have long been used for measuring children’s sex-dimorphic behaviors in Western societies, but few studies have been conducted using these measures for Chinese populations. The current study aimed to empirically examine and modify the two instruments for their applications to Chinese society. Parents of 486 Chinese boys and 417 Chinese girls (6–12 years old) completed a questionnaire comprising items from the CGPQ and CBAQ, and an additional 14 items specifically related to Chinese gender-specific games. Items revealing gender differences in a Chinese sample were identified and used to construct a Child Play Behavior and Activity Questionnaire (CPBAQ). Four new scales were generated through factor analysis: a Gender Scale, a Girl Typicality Scale, a Boy Typicality Scale, and a Cross-Gender Scale (CGS). These scales had satisfactory internal reliabilities and large effect sizes for gender. The CPBAQ is believed to be a promising instrument for measuring children’s gender-related behavior in China. PMID:18719986

  3. 2013 Alaska Performance Scholarship Outcomes Report

    ERIC Educational Resources Information Center

    Rae, Brian

    2013-01-01

    In accordance with Alaska statute the departments of Education & Early Development (EED) and Labor and Workforce Development (DOLWD), the University of Alaska (UA), and the Alaska Commission on Postsecondary Education (ACPE) present this second annual report on the Alaska Performance Scholarship (APS). Among the highlights: (1) In the public…

  4. 2012 Alaska Performance Scholarship Outcomes Report

    ERIC Educational Resources Information Center

    Rae, Brian

    2012-01-01

    As set forth in Alaska Statute 14.43.840, Alaska's Departments of Education & Early Development (EED) and Labor and Workforce Development (DOLWD), the University of Alaska (UA), and the Alaska Commission on Postsecondary Education (ACPE) present this first annual report on the Alaska Performance Scholarship to the public, the Governor,…

  5. The Strength and Difficulties Questionnaire: Russian Validation of the Teacher Version and Comparison of Teacher and Student Reports

    ERIC Educational Resources Information Center

    Ruchkin, Vladislav; Koposov, Roman; Vermeiren, Robert; Schwab-Stone, Mary

    2012-01-01

    Objective: To confirm factor structure of the teacher Strengths and Difficulties Questionnaire (SDQ) and to compare teacher and student reports in Russian youth. Method: The SDQ and psychopathology measures were completed by teachers in a representative sample of urban adolescents (N = 528). The factor structure was examined on two randomly…

  6. The Adult Repetitive Behaviours Questionnaire-2 (RBQ-2A): A Self-Report Measure of Restricted and Repetitive Behaviours

    ERIC Educational Resources Information Center

    Barrett, Sarah L.; Uljarevic, Mirko; Baker, Emma K.; Richdale, Amanda L.; Jones, Catherine R. G.; Leekam, Susan R.

    2015-01-01

    In two studies we developed and tested a new self-report measure of restricted and repetitive behaviours (RRB) suitable for adults. In Study 1, The Repetitive Behaviours Questionnaire-2 for adults (RBQ-2A) was completed by a sample of 163 neurotypical adults. Principal components analysis revealed two components: Repetitive Motor Behaviours and…

  7. The Application of Structured Job Analysis Information Based on the Position Analysis Questionnaire (PAQ). Final Report No. 9.

    ERIC Educational Resources Information Center

    McCormick, Ernest J.

    The Position Analysis Questionnaire (PAQ) is a job analysis instrument consisting of 187 job elements organized into six divisions. The PAQ was used in the eight studies summarized in this final report. The studies were: (1) ratings of the attribute requirements of PAQ job elements, (2) a series of principal components analyses of these attribute…

  8. Brief Report: Preliminary Reliability, Construct Validity and Standardization of the Auditory Behavior Questionnaire (ABQ) for Children with Autism Spectrum Disorders

    ERIC Educational Resources Information Center

    Egelhoff, Kelsey; Lane, Alison E.

    2013-01-01

    The Auditory Behavior Questionnaire (ABQ) evaluates abnormal behavioral responses to auditory stimulation in children with Autism Spectrum Disorder (ASD). This study reports preliminary reliability, construct validity and standardization of the ABQ. Parents of children with ASD aged 7-21 years (n = 165) completed the ABQ on-line. Cronbach's alpha…

  9. The Design and Validation of a Parent-Report Questionnaire for Assessing the Characteristics and Quality of Early Intervention Over Time

    PubMed Central

    Gascon-Ramos, Maria; Campbell, Malcolm; Bamford, John

    2009-01-01

    This article concerns a parent-report repeat questionnaire to evaluate the quality of multiprofessional early intervention following early identification of deafness. It discusses the rationale for the design of the instrument, its theoretical underpinnings, its psychometric properties, and its usability. Results for the validity and reliability of the instrument are based on completion by 82 parents. The questionnaire is divided into four sections. “The description of the structure of professional services” demonstrated good face and content validity; the “content of intervention scale” yielded high internal consistency (Cronbach's α = 0.88) and reliability (6-month test–retest correlations, rho = 0.88, r = .68; 12-month test–retest correlations, rho = 0.60, r = .82); the “process of intervention” scale yielded high internal consistency (Cronbach's α = 0.93) and high reliability on test–retest administration (6-month test–retest correlations, r = 0.64; 12 month test–retest correlations, r = .82); and the short “overall impact” questions were answered well. The Trait Emotional Intelligence Questionnaire was used to control for influence of parental disposition on ratings of quality of intervention. Evaluating the goodness of fit between early intervention and parental priorities/values is discussed as a vital component in improving child and family outcomes. PMID:19617378

  10. Patient-Reported Outcomes and Fibromyalgia.

    PubMed

    Williams, David A; Kratz, Anna L

    2016-05-01

    Fibromyalgia (FM) is classified as a chronic pain condition accompanied by symptoms of fatigue, sleep problems, problems with cognition, negative mood, limited functional status, and the presence of other chronic overlapping pain conditions. Comprehensive assessment of all of these components can be challenging. This paper provides an overview of patient-reported approaches that can be taken to assess FM in the contexts of diagnosis, symptom monitoring, phenotyping/characterization, and for purposes of clinical trials. PMID:27133492

  11. Patient-Reported Shoulder Outcome Measures Utilized in Breast Cancer Survivors: A Systematic Review

    PubMed Central

    Harrington, Shana; Michener, Lori A; Kendig, Tiffany; Miale, Susan; George, Steven Z

    2014-01-01

    Objective 1) To identify English Language published patient-reported upper extremity outcome measures used in breast cancer research and 2) To examine construct validity and responsiveness in patient-reported upper extremity outcome measures used in breast cancer research. Data Sources PubMed, CINAHL and ProQuest MEDLINE® databases were searched up to February 5, 2013. Study Selection Studies were included if a patient-reported upper extremity outcome measure was administered, the participants were diagnosed with breast cancer, and published in English. Data Extraction Eight hundred and sixty-five articles were screened. Fifty-nine full text articles were assessed for eligibility. A total of 46 articles met the initial eligibility criteria for aim 1. Eleven of these articles reported mean and standard deviations for the outcome scores, and included a comparison group analysis for aim 2. Data Synthesis Construct validity was evaluated by calculating effect sizes for known group differences in 6 studies using the Disabilities of Arm, Shoulder and Hand (DASH), Penn Shoulder Score, Shoulder Disability Questionnaire-Dutch, and 10 Questions by Wingate (Wingate). Responsiveness was analyzed comparing a treatment and control group by calculating the coefficient of responsiveness in 5 studies for the DASH and Wingate. Conclusions Eight different patient-reported upper extremity outcome measures have been reported in the peer-review literature for women with breast cancer, some (n=3) were specifically developed for breast cancer survivors and others that were not (n=5). Based on the current evidence we recommend administering the DASH to assess patient-reported upper extremity function in breast cancer survivors because the DASH had most consistently large effects sizes for construct validity and responsiveness. Future large studies are needed for more definitive recommendations. PMID:23932969

  12. Outcome Measures for Artificial Pancreas Clinical Trials: A Consensus Report.

    PubMed

    Maahs, David M; Buckingham, Bruce A; Castle, Jessica R; Cinar, Ali; Damiano, Edward R; Dassau, Eyal; DeVries, J Hans; Doyle, Francis J; Griffen, Steven C; Haidar, Ahmad; Heinemann, Lutz; Hovorka, Roman; Jones, Timothy W; Kollman, Craig; Kovatchev, Boris; Levy, Brian L; Nimri, Revital; O'Neal, David N; Philip, Moshe; Renard, Eric; Russell, Steven J; Weinzimer, Stuart A; Zisser, Howard; Lum, John W

    2016-07-01

    Research on and commercial development of the artificial pancreas (AP) continue to progress rapidly, and the AP promises to become a part of clinical care. In this report, members of the JDRF Artificial Pancreas Project Consortium in collaboration with the wider AP community 1) advocate for the use of continuous glucose monitoring glucose metrics as outcome measures in AP trials, in addition to HbA1c, and 2) identify a short set of basic, easily interpreted outcome measures to be reported in AP studies whenever feasible. Consensus on a broader range of measures remains challenging; therefore, reporting of additional metrics is encouraged as appropriate for individual AP studies or study groups. Greater consistency in reporting of basic outcome measures may facilitate the interpretation of study results by investigators, regulatory bodies, health care providers, payers, and patients themselves, thereby accelerating the widespread adoption of AP technology to improve the lives of people with type 1 diabetes. PMID:27330126

  13. Toronto Psoriatic Arthritis Screening (ToPAS) questionnaire: a report from the GRAPPA 2009 annual meeting.

    PubMed

    Chandran, Vinod; Gladman, Dafna D

    2011-03-01

    The Toronto Psoriatic Arthritis Screening questionnaire (ToPAS) was developed as a tool to screen for psoriatic arthritis (PsA) in patients with psoriasis as well as in the general population. Thus, it differs from PsA-specific screening tools and may be used to screen for PsA in epidemiologic and family investigations. In a presentation at the 2009 annual meeting of GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) in Stockholm, Sweden, the authors described the development, testing, and validation of the ToPAS tool. Results of a comparison of the ToPAS questionnaire with the Psoriatic Arthritis Screening and Evaluation (PASE) questionnaire were also presented. Modification and further validation of the ToPAS are under way. PMID:21362783

  14. Temporal preference in individuals reporting chronic pain: discounting of delayed pain-related and monetary outcomes.

    PubMed

    Tompkins, D Andrew; Johnson, Patrick S; Smith, Michael T; Strain, Eric C; Edwards, Robert R; Johnson, Matthew W

    2016-08-01

    Opioid therapy for pain is associated with an increased risk for substance use disorders. This study's purpose was to determine the association between opioid misuse propensity (Screener and Opioid Assessment for Patients in Pain-Revised) and delay discounting (DD), a behavioral process linked to substance use disorders, which quantifies the extent to which outcomes are devalued because of their delay. Participants reporting chronic pain (N = 249) answered pain and opioid use questions and then completed 4 DD tasks. Each of these tasks assessed either money or pain consequences, framed as either rewards or punishments. Each task involved hypothetical choices between immediate smaller vs delayed larger consequences. The extant Monetary Choice Questionnaire assessed DD of money rewards, and a modified version assessed discounting of money losses (immediate smaller loss vs larger delayed loss). Based on the Monetary Choice Questionnaire, the novel Pain Relief Choice Questionnaire assessed choices between an immediate short duration of pain relief vs a longer duration of pain relief. Similarly, the novel Additional Pain Choice Questionnaire assessed choices between an immediate short duration of additional pain vs a longer duration of additional pain. Discounting of both additional pain and money losses were significantly associated with high Screener and Opioid Assessment for Patients in Pain-Revised scores-indicating participants at greatest risk for opioid misuse discount future punishments rather than future rewards compared with those at low risk. Measures of DD may have promise in more accurately identifying individuals at highest risk for opioid misuse during chronic opioid therapy. PMID:27075431

  15. Longitudinal Surveys of Australian Youth (LSAY): 2006 Cohort Wave 4 (2009)--Questionnaire. Technical Report 56A

    ERIC Educational Resources Information Center

    National Centre for Vocational Education Research (NCVER), 2010

    2010-01-01

    The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This technical paper contains the questionnaire for the LSAY 2006 cohort Wave 4 (2009) data set. [For the "Longitudinal Surveys of Australian Youth (LSAY): 2006…

  16. Longitudinal Surveys of Australian Youth (LSAY) 1998 Cohort: Wave 12 (2009)--Questionnaire. Technical Report 58A

    ERIC Educational Resources Information Center

    National Centre for Vocational Education Research (NCVER), 2010

    2010-01-01

    The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This technical paper contains the questionnaire for the LSAY 1998 cohort Wave 12 (2009) data set. [For the accompanying frequency tables, "Longitudinal Surveys of…

  17. Longitudinal Surveys of Australian Youth (LSAY) 2009 Cohort: Wave 3 (2011)--Questionnaire. Technical Report 72A

    ERIC Educational Resources Information Center

    National Centre for Vocational Education Research (NCVER), 2012

    2012-01-01

    The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This technical paper contains the questionnaire for the LSAY 2009 cohort Wave 3 (2011) data set.

  18. Of the Report of the Questionnaire Study of English Teaching Conditions in Arizona.

    ERIC Educational Resources Information Center

    Donelson, Kenneth L., Ed.

    1969-01-01

    Teachers in Arizona were surveyed by questionnaire to determine the present quality of English instruction and to prepare a profile of English teachers and English teaching in the state. Returns were received from 81 of 113 schools surveyed (647 of 1026 teachers). Information obtained on English teachers indicated that (1) 41% of the English…

  19. IITS Students' Evaluation Questionnaire for the Fall Semester of 1991. A Summary and Report.

    ERIC Educational Resources Information Center

    Jones, Ted

    A mail survey of students enrolled in distance education classes in library science and health education and promotion was conducted after the courses were first offered in the fall semester of 1991. The 77-item questionnaire explored attitudes, opinions, and preferences relating to the Intercampus, Interactive Telecommunications System (IITS),…

  20. Longitudinal Surveys of Australian Youth (LSAY) 2009 Cohort: Wave 2 (2010)-- Questionnaire. Technical Report 71A

    ERIC Educational Resources Information Center

    National Centre for Vocational Education Research (NCVER), 2012

    2012-01-01

    The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This technical paper contains the questionnaire for the LSAY 2009 cohort Wave 2 (2010) data set.

  1. Initial Psychometric Properties of the Experiences Questionnaire: Validation of a Self-Report Measure of Decentering

    ERIC Educational Resources Information Center

    Fresco, David M.; Moore, Michael T.; van Dulmen, Manfred H. M.; Segal, Zindel V.; Ma, S. Helen; Teasdale, John D.; Williams, J. Mark G.

    2007-01-01

    Decentering is defined as the ability to observe one's thoughts and feelings as temporary, objective events in the mind, as opposed to reflections of the self that are necessarily true. The Experiences Questionnaire (EQ) was designed to measure both decentering and rumination but has not been empirically validated. The current study investigated…

  2. Results of the College Diagnostic Questionnaire (CDQ) Fall 1973. Research Report No. 348.

    ERIC Educational Resources Information Center

    Brandenburg, Dale C.

    The 109-item College Diagnostic Questionnaire (CDQ) was designed to assess student attitudes toward a variety of activities occurring before classes begin at the University of Illinois at Urbana-Champaign (UIUC). The CDQ was administered to the 4,502 freshmen (58% of the total freshmen class) who attended the College Diagnostic Testing Session…

  3. Longitudinal Surveys of Australian Youth (LSAY) 2006 Cohort: Wave 6 (2011)--Questionnaire. Technical Report 75A

    ERIC Educational Resources Information Center

    National Centre for Vocational Education Research (NCVER), 2012

    2012-01-01

    The Longitudinal Surveys of Australian Youth (LSAY) program studies the progress of several groups of young Australians as they move from school into post-secondary education and work. This series of documents provides supporting information for the LSAY data set of the 2006 cohort at wave 6 (2011). The document presents the questionnaire for LSAY…

  4. Clients' Perception of Outcome of Team-Based Prenatal and Reproductive Genetic Counseling in Serbian Service Using the Perceived Personal Control (PPC) Questionnaire.

    PubMed

    Cuturilo, Goran; Vucinic, Olivera Kontic; Novakovic, Ivana; Ignjatovic, Svetlana; Mijovic, Marija; Sulovic, Nenad; Vukolic, Dusan; Komnenic, Milica; Tadic, Jasmina; Cetkovic, Aleksandar; Belic, Aleksandra; Ljubic, Aleksandar

    2016-02-01

    This is the first study in Serbia and the region of South-East Europe dedicated to clients' perception of outcome and efficiency of prenatal and reproductive genetic counseling. The primary aim of this study was to assess overall value and success of genetic counseling in prenatal and reproductive care with regard to perceived personal control of clients, reflecting also in a part patient comprehension, knowledge retention, and empowerment in decision-making. The standardized Perceived Personal Control questionnaire (PPC) was used for the assessment of 239 female participants. First, we performed a complete validation of the psychometric characteristics of the Serbian-language version of the PPC questionnaire. The validation of the questionnaire permits other researchers from Serbian-speaking regions of South-East Europe to use this standard instrument to assess the effectiveness of prenatal genetic counseling in their communities and analyze advantages and disadvantages of their counseling models. We also measured social and demographic characteristics of participants. Further, we analyzed effects of our team-based prenatal and reproductive genetic counseling model through (a) calculation of PPC scores at three different stages (before initial, after initial, and before second counseling session), and (b) by assessing participants' responses by indication for referral (advanced maternal age, abnormal biochemical screening, family history of hereditary disorders, maternal exposure to drugs, exposure to radiation, exposure to infective agents, infertility or recurrent abortions, and miscellaneous). The results indicate that participants' knowledge after initial counseling increased significantly and after that remained stable and sustainable. A satisfactory level of confidence among participants had been achieved, in that many felt an increased sense of control over their situation and emotional response to it. Indirectly, these results indicate the success of a

  5. Power and Sample Size Determination for the Group Comparison of Patient-Reported Outcomes with Rasch Family Models

    PubMed Central

    Blanchin, Myriam; Hardouin, Jean-Benoit; Guillemin, Francis; Falissard, Bruno; Sébille, Véronique

    2013-01-01

    Background Patient-reported outcomes (PRO) that comprise all self-reported measures by the patient are important as endpoint in clinical trials and epidemiological studies. Models from the Item Response Theory (IRT) are increasingly used to analyze these particular outcomes that bring into play a latent variable as these outcomes cannot be directly observed. Preliminary developments have been proposed for sample size and power determination for the comparison of PRO in cross-sectional studies comparing two groups of patients when an IRT model is intended to be used for analysis. The objective of this work was to validate these developments in a large number of situations reflecting real-life studies. Methodology The method to determine the power relies on the characteristics of the latent trait and of the questionnaire (distribution of the items), the difference between the latent variable mean in each group and the variance of this difference estimated using Cramer-Rao bound. Different scenarios were considered to evaluate the impact of the characteristics of the questionnaire and of the variance of the latent trait on performances of the Cramer-Rao method. The power obtained using Cramer-Rao method was compared to simulations. Principal Findings Powers achieved with the Cramer-Rao method were close to powers obtained from simulations when the questionnaire was suitable for the studied population. Nevertheless, we have shown an underestimation of power with the Cramer-Rao method when the questionnaire was less suitable for the population. Besides, the Cramer-Rao method stays valid whatever the values of the variance of the latent trait. Conclusions The Cramer-Rao method is adequate to determine the power of a test of group effect at design stage for two-group comparison studies including patient-reported outcomes in health sciences. At the design stage, the questionnaire used to measure the intended PRO should be carefully chosen in relation to the studied

  6. Application of Bother in patient reported outcomes instruments across cultures

    PubMed Central

    2014-01-01

    Background The objective of this study was to determine the applicability of the term bother, as used in Patient Reported Outcomes (PRO) instruments that will be translated into foreign languages from English for the United States. Bother is versatile in English for the U.S., in that it can describe negative mental states and physical sensations, as well as social disturbances. Bother has many different meanings across cultures, due to this versatility. Alternatives for bother were explored for future PRO instrument development. Methods A PRO instrument used to evaluate the degree of bother resulting from psoriasis was analyzed. This disease can negatively impact patients physically, emotionally and socially. Translations of bother were analyzed to determine its meaning when translated into other languages. Cognitive debriefing was conducted on psoriasis patients with the instrument containing bother. Following cognitive debriefing, a questionnaire was distributed to linguists and cognitive debriefing subjects to collect definitions of bother in each target language, and detail any difficulty with translation. To establish alternatives to bother and demonstrate the breakdown of concepts within bother, translations of the Dermatology Quality of Life Index (DLQI) were analyzed. This instrument was selected for its focus on psoriasis and use of terminology that lacks the ambiguity of bother. Results An analysis of back-translations revealed that bother yielded a back-translation that was conceptually different from the source 20% of the time (5/26). Analysis of alternative terminology found in the DLQI revealed much greater conceptual equivalence when translated into other languages. Conclusion When developing the wording of PRO instruments, the terminology chosen should be applicable across languages to allow for international pooling and comparison of data. While all linguists and subjects of cognitive debriefing understood bother to have a negative connotation, a

  7. The History of Patient-Reported Outcomes in Rheumatology.

    PubMed

    Callahan, Leigh F

    2016-05-01

    The rheumatology community began incorporating patient-reported outcomes in the early 1980s, helping shift the care of chronic diseases from a narrower biomedical model to a broader biopsychosocial model of health. Early efforts were focused primarily in clinical trials and clinical research, but over the last decade there has been increasing use in routine rheumatology clinical care. More than 250 valid and reliable scales to assess domains of importance to patients with rheumatic conditions have been developed. The approach to measurement continues to be refined. Rheumatology has much to be proud of in contributions to the important field of patient-reported outcomes. PMID:27133485

  8. Brief report: A confirmatory approach to the validation of the peer group norm questionnaire.

    PubMed

    Marshall-Denton, Rhea; Véronneau, Marie-Hélène; Dishion, Thomas J

    2016-07-01

    This study evaluates the internal validity of the "Perception of Peer Group Norms Questionnaire" (PPGNQ), a 17-item measure that assesses middle school students' perceptions of positive and negative norms among their grade mates. The sample consisted of 1073 Grade 6 students. The factorability of the two hypothesized factors was assessed with Exploratory Factor Analysis and a clear two-factor structure emerged. Using Confirmatory Factor Analysis this two-factor model evidenced good fit once items of similar wording and subject matter were permitted to correlate. Support was found for metric, strict, scalar, construct and latent means invariance between genders, suggesting that boys and girls perceived items similarly. The results indicate that the PPGNQ may be recommended as a research questionnaire that demonstrates high internal validity and measurement invariance, and can be used to study the influence of the perception of both negative and positive norms on adolescent behavior in school settings. PMID:27163173

  9. Psychometric properties of an innovative self-report measure: The Social Anxiety Questionnaire for Adults

    PubMed Central

    Caballo, Vicente E.; Arias, Benito; Salazar, Isabel C.; Irurtia, María Jesús; Hofmann, Stefan G.

    2015-01-01

    This paper presents the psychometric properties of a new measure of social anxiety, the Social Anxiety Questionnaire for adults (SAQ), composed of 30 items that were developed based on participants from 16 Latin American countries, Spain, and Portugal. Two groups of participants were included in the study: a non-clinical group involving 18,133 persons and a clinical group comprising 334 patients with a diagnosis of social anxiety disorder (social phobia). Exploratory and confirmatory factor analyses supported a 5-factor structure of the questionnaire. The factors were labeled: 1) Interactions with strangers, 2) Speaking in public/talking with people in authority, 3) Interactions with the opposite sex, 4) Criticism and embarrassment, and 5) Assertive expression of annoyance, disgust or displeasure. Psychometric evidence supported the internal consistency, convergent validity, and measurement invariance of the SAQ. To facilitate clinical applications, a ROC analysis identified cut scores for men and women for each factor and for the global score. PMID:25774643

  10. Assessing adult leisure activities: an extension of a self-report activity questionnaire.

    PubMed

    Jopp, Daniela S; Hertzog, Christopher

    2010-03-01

    Everyday leisure activities in adulthood and old age have been investigated with respect to constructs such as successful aging, an engaged lifestyle, and prevention of age-related cognitive decline. They also relate to mental health and have clinical value, as they can inform diagnosis and interventions. In the present study, the authors enhanced the content validity of the Victoria Longitudinal Study activity questionnaire by adding items on physical and social activities and validated a shortened version of the questionnaire. The proposed leisure activity model included 11 activity categories: 3 types of social activities (i.e., activities with close social partners, group-centered public activity, religious activities), physical activities, developmental activities, experiential activities, crafts, game playing, TV watching, travel, and technology use. Confirmatory factor analyses validated the proposed factor structure in 2 independent samples. A higher order model with a general activity factor fitted the activity factor correlations with relatively little loss of fit. Convergent and discriminant validity for the activity scales were supported by patterns of their correlations with education, health, depression, cognition, and personality. In sum, the scores derived from of the augmented Victoria Longitudinal Study activity questionnaire demonstrate good reliability, and validity evidence supports their use as measures of leisure activities in young, middle-aged, and older individuals. PMID:20230157

  11. Assessing Adult Leisure Activities: An Extension of a Self-Report Activity Questionnaire

    PubMed Central

    Jopp, Daniela; Hertzog, Christopher

    2009-01-01

    Everyday leisure activities in adulthood and old age have been investigated with respect to constructs such as successful aging, an engaged lifestyle, and prevention of age-related cognitive decline. They also relate to mental health and have clinical value as they can inform diagnosis and interventions. In the present study, we enhanced the content validity of the Victoria Longitudinal Study activity questionnaire by adding items on physical and social activities, and validated a shortened version of the questionnaire. Our proposed leisure activity model included 11 activity categories: three types of social activities (i.e., activities with close social partners, group-centered public activity, religious activities), physical, developmental, and experiential activities, crafts, game playing, TV watching, travel, and technology use. Confirmatory factor analyses validated the proposed factor structure in two independent samples. A higher-order model with a general activity factor fitted the activity factor correlations with relatively little loss of fit. Convergent and discriminant validity for the activity scales were supported by patterns of their correlations with education, health, depression, cognition, and personality. In sum, the scores derived from of the augmented VLS activity questionnaire demonstrate good reliability, and validity evidence supports their use as measure of leisure activities in young, middle-aged, and older individuals. PMID:20230157

  12. Patient-reported outcomes in obsessive-compulsive disorder

    PubMed Central

    Subramaniam, Mythily; Soh, Pauline; Ong, Clarissa; Esmond Seow, Lee Seng; Picco, Louisa; Vaingankar, Janhavi Ajit; Chong, Siow Ann

    2014-01-01

    The purpose of the article was to provide an overview of patient-reported outcomes (PROs) and related measures that have been examined in the context of obsessive-compulsive disorder (OCD). The current review focused on patient-reported outcome measures (PROMs) that evaluated three broad outcome domains: functioning, health-related quality of life (HRQoL), and OCD-related symptoms. The present review ultimately included a total of 155 unique articles and 22 PROMs. An examination of the PROs revealed that OCD patients tend to suffer from significant functional disability, and report lower HRQoL than controls. OCD patients report greater symptom severity than patients with other mental disorders and evidence indicates that PROMs are sensitive to change and may be even better than clinician-rated measures at predicting treatment outcomes. Nonetheless, it should be noted that the measures reviewed lacked patient input in their development. Future research on PROMs must involve patient perspectives and include rigorous psychometric evaluation of these measures. PMID:25152661

  13. Meeting Report: Outcomes from the Undergraduate Research Summit

    ERIC Educational Resources Information Center

    Wenzel, Thomas J.

    2004-01-01

    This article reports the outcomes from the undergraduate research summit held on August 2003 at Bates College in Lewiston, Maine. This summit brought together an array of stakeholders from the chemistry community, ranging from those with a long history of success in undergraduate research to junior faculty members who have started on a trajectory…

  14. 'The patient': at the center of patient-reported outcomes.

    PubMed

    Awad, A George

    2015-01-01

    The recent emphasis of including patient reports in their own care management is reviewed in terms of the factors that contributed to its popularity. The role change of patients as being active participants in their own care as a result of the rising consumerism and advocacy has led to increased pressures for including patients in the therapeutic decision-making process. As consumers of clinical services, their perspectives and attitudes towards health and illness acquired more importance. The rising cost of healthcare has added another dimension in cost containment by empowering patients and sharing responsibility in their recovery, which hopefully can improve outcomes. Challenges in the development and implementation of patient-reported outcomes in psychiatry are reviewed and include the still unresolved subjective/objective dichotomy, identification of the most appropriate and relevant patient-reported outcomes. Few outcomes are identified and include: subjective tolerability of medication, self-reported health-related quality of life, preferences, patients' attitudes towards health and illness, satisfaction with medication and overall satisfaction of quality of care, and functional state, with particular focus on social functioning. PMID:26289737

  15. Student Reports of Peer Threats of Violence: Prevalence and Outcomes

    ERIC Educational Resources Information Center

    Nekvasil, Erin K.; Cornell, Dewey G.

    2012-01-01

    Authorities in education and law enforcement have recommended that schools use a threat-assessment approach to prevent violence, but there is relatively little research on characteristics and outcomes of threats among students. The current study examined student reports of threat experiences in a sample of 3,756 high school students. Approximately…

  16. Personality, Organizational Orientations and Self-Reported Learning Outcomes

    ERIC Educational Resources Information Center

    Bamber, David; Castka, Pavel

    2006-01-01

    Purpose: To identify competencies connecting personality, organizational orientations and self-reported learning outcomes (as measured by concise Likert-type scales), for individuals who are learning for their organizations. Design/methodology/approach: Five concise factor scales were constructed to represent aspects of personality. Three further…

  17. Raising future forensic pathologists (first report): results of a preliminary questionnaire survey.

    PubMed

    Murakami, Manabu; Matoba, Kotaro; Terazawa, Koichi

    2012-08-01

    The shortage of future forensic pathologists is a serious problem both in Japan and overseas. In Japan, however, factors such as government budget cuts and increasing the autopsy rates, make the condition even worse. In an attempt to improve this situation, we implemented a questionnaire survey to investigate the particular features necessary when selecting a career in forensic medicine. As a preliminary study, we sent the questionnaire along with an anonymous answer sheet to all forensic pathologists with a degree in medicine M.D., who were affiliated with universities in Hokkaido and the Tohoku district of Japan as of August 2011. Thirteen physicians in nine universities (response rate 77.8%) returned the answer sheet. Characteristics of participants are listed below: years of experience, board specialty and number of years as board certified specialists, percentage of work effort spent on autopsy practice, the time when they decided to work as a forensic pathologist, the time when to best recommend forensic pathologist as a career, and crucial factors in choosing the specialty of forensic medicine. As a result of this research, we've revealed the importance of undergraduate medical education or the effect on the role models. Furthermore, we've also extracted miscellaneous comments, such as standardization of minimum requirements. In our study, we' ve found some clues to increase future candidates in the field forensic medicine. However, we must collect further samples for our questionnaire survey to validate the study, and, as a future project, we must also address this problem at the congress of forensic medicine. PMID:23016267

  18. The Discrete Emotions Questionnaire: A New Tool for Measuring State Self-Reported Emotions.

    PubMed

    Harmon-Jones, Cindy; Bastian, Brock; Harmon-Jones, Eddie

    2016-01-01

    Several discrete emotions have broad theoretical and empirical importance, as shown by converging evidence from diverse areas of psychology, including facial displays, developmental behaviors, and neuroscience. However, the measurement of these states has not progressed along with theory, such that when researchers measure subjectively experienced emotions, they commonly rely on scales assessing broad dimensions of affect (positivity and negativity), rather than discrete emotions. The current manuscript presents four studies that validate a new instrument, the Discrete Emotions Questionnaire (DEQ), that is sensitive to eight distinct state emotions: anger, disgust, fear, anxiety, sadness, happiness, relaxation, and desire. Emotion theory supporting the importance of distinguishing these specific emotions is reviewed. PMID:27500829

  19. The Discrete Emotions Questionnaire: A New Tool for Measuring State Self-Reported Emotions

    PubMed Central

    Harmon-Jones, Cindy; Bastian, Brock

    2016-01-01

    Several discrete emotions have broad theoretical and empirical importance, as shown by converging evidence from diverse areas of psychology, including facial displays, developmental behaviors, and neuroscience. However, the measurement of these states has not progressed along with theory, such that when researchers measure subjectively experienced emotions, they commonly rely on scales assessing broad dimensions of affect (positivity and negativity), rather than discrete emotions. The current manuscript presents four studies that validate a new instrument, the Discrete Emotions Questionnaire (DEQ), that is sensitive to eight distinct state emotions: anger, disgust, fear, anxiety, sadness, happiness, relaxation, and desire. Emotion theory supporting the importance of distinguishing these specific emotions is reviewed. PMID:27500829

  20. Health Services OutPatient Experience questionnaire: factorial validity and reliability of a patient-centered outcome measure for outpatient settings in Italy

    PubMed Central

    Coluccia, Anna; Ferretti, Fabio; Pozza, Andrea

    2014-01-01

    Purpose The patient-centered approach to health care does not seem to be sufficiently developed in the Italian context, and is still characterized by the biomedical model. In addition, there is a lack of validated outcome measures to assess outpatient experience as an aspect common to a variety of settings. The current study aimed to evaluate the factorial validity, reliability, and invariance across sex of the Health Services OutPatient Experience (HSOPE) questionnaire, a short ten-item measure of patient-centeredness for Italian adult outpatients. The rationale for unidimensionality of the measure was that it could cover global patient experience as a process common to patients with a variety of diseases and irrespective of the phase of treatment course. Patients and methods The HSOPE was compiled by 1,532 adult outpatients (51% females, mean age 59.22 years, standard deviation 16.26) receiving care in ten facilities at the Santa Maria alle Scotte University Hospital of Siena, Italy. The sample represented all the age cohorts. Twelve percent were young adults, 57% were adults, and 32% were older adults. Exploratory and confirmatory factor analyses were conducted to evaluate factor structure. Reliability was evaluated as internal consistency using Cronbach’s α. Factor invariance was assessed through multigroup analyses. Results Both exploratory and confirmatory analyses suggested a clearly defined unidimensional structure of the measure, with all the ten items having salient loadings on a single factor. Internal consistency was excellent (α=0.95). Indices of model fit supported a single-factor structure for both male and female outpatient groups. Young adult outpatients had significantly lower scores on perceived patient-centeredness relative to older adults. No significant difference emerged on patient-centeredness between male and female outpatients. Conclusion The HSOPE questionnaire seemed to be a tool with high acceptability and excellent psychometric

  1. Predictable Outcomes with Porcelain Laminate Veneers: A Clinical Report.

    PubMed

    Pimentel, Welson; Teixeira, Marcelo Lucchesi; Costa, Priscila Paganini; Jorge, Mônica Zacharias; Tiossi, Rodrigo

    2016-06-01

    This clinical report describes how to achieve predictable outcomes for anterior teeth esthetic restorations with porcelain laminate veneers by associating the digital planning and design of the restoration with interim restorations. The previous digital smile design of the restoration eliminates the communication barrier with the patient and assists the clinician throughout patient treatment. Interim restorations (diagnostic mock-ups) further enhance communication with the patient and prevent unnecessary tooth reduction for conservative tooth preparation. Adequate communication between patient and clinician contributes to successful definitive restorations and patient satisfaction with the final esthetic outcome. PMID:26633080

  2. Patient-reported outcomes as primary end points in clinical trials of inflammatory bowel disease.

    PubMed

    Williet, Nicolas; Sandborn, William J; Peyrin-Biroulet, Laurent

    2014-08-01

    The Food and Drug Administration (FDA) is moving from the Crohn's Disease Activity Index to patient-reported outcomes (PROs) and objective measures of disease, such as findings from endoscopy. PROs will become an important aspect of assessing activity of inflammatory bowel disease (IBD) and for labeling specific drugs for this disease. PROs always have been considered in the management of patients with rheumatoid arthritis or multiple sclerosis, and have included measurements of quality of life, disability, or fatigue. Several disease-specific scales have been developed to assess these PROs and commonly are used in clinical trials. Outcomes reported by patients in clinical trials of IBD initially focused on quality of life, measured by the Short-Form 36 questionnaire or disease-specific scales such as the Inflammatory Bowel Disease Questionnaire or its shorter version. Recently considered factors include fatigue, depression and anxiety, and work productivity, as measured by the Functional Assessment Chronic Illness Therapy-Fatigue, the Hospital Anxiety Depression, and the Work Productivity Activity Impairment Questionnaire, respectively. However, few data are available on how treatment affects these factors in patients with IBD. Although disability generally is recognized in patients with IBD, it is not measured. The international IBD disability index currently is being validated. None of the PROs currently used in IBD were developed according to FDA guidance for PRO development. PROs will be a major primary end point of future trials. FDA guidance is needed to develop additional PROs for IBD that can be incorporated into trials, to better compare patients' experience with different therapies. PMID:24534550

  3. The Gutenberg Health Study: measuring psychosocial factors at work and predicting health and work-related outcomes with the ERI and the COPSOQ questionnaire

    PubMed Central

    2013-01-01

    Background Several instruments have been developed to assess psychosocial workload. We compared two of these instruments, the Effort-Reward Imbalance (ERI) model and the Copenhagen Psychosocial Questionnaire (COPSOQ) with regard to congruent validity and internal validity. Methods This analysis is based on a population-based sample of the baseline examination of 2,783 employees from the Gutenberg Health Study (GHS). About half of the participants completed the ERI questionnaire (n = 1,342), the other half completed the COPSOQ (n = 1,441). First, the two samples were compared and descriptive analyses were carried out calculating mean values for both instruments in general, then separately for age, gender and main occupational groups. Second, we analyzed the relationship between ERI and COPSOQ scales on the workplace situation and on the workplace outcomes: job satisfaction, general health, burnout, satisfaction with life, by applying stepwise logistic regression analysis. Results and discussion For the majority of occupations, high effort as reflected by the ERI corresponded with high demands as reflected by the COPSOQ. Comparably, high reward (according to ERI) yielded a good agreement with high “influence and development” (according to COPSOQ). However, we could also find differences between ERI and COPSOQ concerning the intensity of psychosocial workload in some occupations (e.g., physicians/pharmacists or warehouse managers/warehousemen/transport workers). These differences point to differing theoretical concepts of ERI and COPSOQ. When the ability of ERI and COPSOQ was examined to determine the associations with health and work outcomes, burnout could be better predicted by the COPSOQ; this might be due to the fact that COPSOQ comprises the constructs “work-privacy conflict” and “emotional demand”, which are closely related to burnout. However, methodological differences between these instruments limit their direct comparability. Conclusions

  4. Validation of a self-report questionnaire version of the Child Activity Limitations Interview (CALI): The CALI-21

    PubMed Central

    Palermo, Tonya M.; Lewandowski, Amy S.; Long, Anna C.; Burant, Christopher J.

    2011-01-01

    The Child Activity Limitations Interview (CALI) is a measure designed to assess functional impairment due to chronic pain in school-age children. In this study, we present a self-report questionnaire version of the CALI (the CALI-21) that extends the original interview measure. The purpose of the current study was to provide internal consistency, cross-informant reliability and construct validity of the CALI-21 on a clinical sample of children and adolescents with chronic pain conditions. One hundred fifty-five children and adolescents (65 males, 90 females; ages 8–18 years, M = 14.31, SD =2.45) with chronic pain completed questionnaires as part of their clinic intake procedures at their consultation visit in a pediatric pain management clinic. An exploratory factor analysis was conducted to measure latent constructs within the broader domain of functional impairment. Results of the exploratory factor analysis yielded two factors representing limitation in Active and Routine activities on both parent and child report. Parent and child total CALI scores correlated with measures of pain intensity, however, different patterns of correlations emerged between age, pain intensity, depressive symptoms, and the Active and Routine factors. The CALI-21 showed good internal consistency, high cross-informant reliability, and demonstrated construct validity. The CALI-21 provides increased flexibility via the questionnaire format in the assessment of pain-related activity limitations in children. Factor analysis extends information about specific types of activity limitations experienced by children. PMID:18692316

  5. Developing core outcomes sets: methods for identifying and including patient-reported outcomes (PROs)

    PubMed Central

    2014-01-01

    Background Synthesis of patient-reported outcome (PRO) data is hindered by the range of available PRO measures (PROMs) composed of multiple scales and single items with differing terminology and content. The use of core outcome sets, an agreed minimum set of outcomes to be measured and reported in all trials of a specific condition, may improve this issue but methods to select core PRO domains from the many available PROMs are lacking. This study examines existing PROMs and describes methods to identify health domains to inform the development of a core outcome set, illustrated with an example. Methods Systematic literature searches identified validated PROMs from studies evaluating radical treatment for oesophageal cancer. PROM scale/single item names were recorded verbatim and the frequency of similar names/scales documented. PROM contents (scale components/single items) were examined for conceptual meaning by an expert clinician and methodologist and categorised into health domains. A patient advocate independently checked this categorisation. Results Searches identified 21 generic and disease-specific PROMs containing 116 scales and 32 single items with 94 different verbatim names. Identical names for scales were repeatedly used (for example, ‘physical function’ in six different measures) and others were similar (overlapping face validity) although component items were not always comparable. Based on methodological, clinical and patient expertise, 606 individual items were categorised into 32 health domains. Conclusion This study outlines a methodology for identifying candidate PRO domains from existing PROMs to inform a core outcome set to use in clinical trials. PMID:24495582

  6. Parenting Behavior in Mothers of Preschool Children with ASD: Development of a Self-Report Questionnaire

    PubMed Central

    Lambrechts, Greet; Maljaars, Jarymke; Boonen, Hannah; van Esch, Lotte; Van Leeuwen, Karla; Noens, Ilse

    2015-01-01

    Parents of young children with autism spectrum disorder (ASD) encounter many daily challenges and often experience much stress. However, little research exists about parenting behavior among these parents. With this study, we aim to address this gap. We examined the structure and internal consistency of a questionnaire intended to measure parenting behavior among mothers of young children with ASD. Furthermore, we compared parenting behavior among mothers of young children with and without ASD between two and six years old. Factor analyses resulted in a factor solution with seven subscales of parenting behavior. Two additional subscales especially relevant for parenting preschoolers with ASD were also considered. Analyses of covariance, controlling for gender and age, showed significantly higher scores for Discipline and Stimulating the Development in the control group in comparison with the ASD group. These findings suggest that mothers of preschoolers with ASD are still trying to find strategies to guide and stimulate their child's behavior and development effectively. PMID:26605085

  7. Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

    PubMed Central

    Jones, Helen; Thomas, James; Newsham, Alex; Downing, Amy; Morris, Eva; Brown, Julia; Velikova, Galina; Forman, David; Wright, Penny

    2013-01-01

    Background Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. Objective This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Methods Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. Results ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback

  8. The measurement of patient-reported outcomes of refractive surgery: the refractive status and vision profile.

    PubMed Central

    Schein, O D

    2000-01-01

    PURPOSE: To develop a questionnaire, the Refractive Status and Vision Profile (RSVP), to assess health-related quality of life associated with refractive error and its correction. METHODS: The published literature on patient report of visual and overall function was reviewed, and the RSVP was self-administered by 550 participants with refractive error. Cross-sectional validation was performed using standard psychometric techniques. The responsiveness of the RSVP to surgical intervention was assessed prospectively in a subset of 176 patients. The principal outcomes measures were scores on the overall RSVP scale (S) and on 8 RSVP subscales (functioning, driving, concern, expectations, symptoms, glare, optical problems, problems with corrective lenses). RESULTS: The RSVP (S) and its subscales demonstrated very good internal consistency (Cronbach's alpha, 0.70-0.93). S and several subscale scores were independently associated with satisfaction with vision and were more correlated with satisfaction with vision than with either visual acuity or refractive error. Higher refractive error was associated with lower scores on S and on 5 subscales. In the prospective surgical cohort, 15% of patients had some worsening in their total RSVP score; however, substantial variation was seen in the individual subscales where worsening ranged from 7% (problems with corrective lenses) to 41% (driving). The effect size (measure of responsiveness) of the RSVP and most of its subscales was very high. Approximately 14% of patients had significant worsening in 3 or more subscales, and this outcome was found to be independently associated with being dissatisfied with vision following surgery (OR, 5.84; 95% CI, 1.88, 8.13). CONCLUSIONS: The RSVP has been validated as a questionnaire that measures patient-reported quality of life related to refractive error and its correction. It is responsive to surgical intervention and provides important information regarding patient outcomes not available

  9. A proposed set of metrics for standardized outcome reporting in the management of low back pain

    PubMed Central

    Clement, R Carter; Welander, Adina; Stowell, Caleb; Cha, Thomas D; Chen, John L; Davies, Michelle; Fairbank, Jeremy C; Foley, Kevin T; Gehrchen, Martin; Hagg, Olle; Jacobs, Wilco C; Kahler, Richard; Khan, Safdar N; Lieberman, Isador H; Morisson, Beth; Ohnmeiss, Donna D; Peul, Wilco C; Shonnard, Neal H; Smuck, Matthew W; Solberg, Tore K; Stromqvist, Bjorn H; Hooff, Miranda L Van; Wasan, Ajay D; Willems, Paul C; Yeo, William; Fritzell, Peter

    2015-01-01

    Background and purpose Outcome measurement has been shown to improve performance in several fields of healthcare. This understanding has driven a growing interest in value-based healthcare, where value is defined as outcomes achieved per money spent. While low back pain (LBP) constitutes an enormous burden of disease, no universal set of metrics has yet been accepted to measure and compare outcomes. Here, we aim to define such a set. Patients and methods An international group of 22 specialists in several disciplines of spine care was assembled to review literature and select LBP outcome metrics through a 6-round modified Delphi process. The scope of the outcome set was degenerative lumbar conditions. Results Patient-reported metrics include numerical pain scales, lumbar-related function using the Oswestry disability index, health-related quality of life using the EQ-5D-3L questionnaire, and questions assessing work status and analgesic use. Specific common and serious complications are included. Recommended follow-up intervals include 6, 12, and 24 months after initiating treatment, with optional follow-up at 3 months and 5 years. Metrics for risk stratification are selected based on pre-existing tools. Interpretation The outcome measures recommended here are structured around specific etiologies of LBP, span a patient’s entire cycle of care, and allow for risk adjustment. Thus, when implemented, this set can be expected to facilitate meaningful comparisons and ultimately provide a continuous feedback loop, enabling ongoing improvements in quality of care. Much work lies ahead in implementation, revision, and validation of this set, but it is an essential first step toward establishing a community of LBP providers focused on maximizing the value of the care we deliver. PMID:25828191

  10. Patient-Reported Outcome Coordinator Did Not Improve Quality of Life Assessment Response Rates: A Report from the Children's Oncology Group

    PubMed Central

    Johnston, Donna; Gerbing, Robert; Alonzo, Todd; Aplenc, Richard; Nagarajan, Rajaram; Schulte, Fiona; Cullen, Patricia; Sung, Lillian

    2015-01-01

    Purpose Health related quality of life (HRQL) assessments during therapy for pediatric cancer provide valuable information to better understand the patient experience. Our objective was to determine the impact of a patient-reported outcome (PRO) coordinator on HRQL questionnaire completion rates during a pediatric acute myeloid leukemia (AML) trial. Methods AAML1031 is a multicenter Children’s Oncology Group therapeutic trial for de novo AML with a secondary aim to assess HRQL of children and adolescents treated with chemotherapy and hematopoietic stem cell transplantation (HSCT). Parents/guardians are the primary respondents and four questionnaires are administered at eight time points. The questionnaires are the PedsQL 4.0 Generic Core Scales, PedsQL 3.0 Acute Cancer Module, PedsQL Multidimensional Fatigue Scale, and the Pediatric Inventory for Parents. To improve response rates, a central PRO coordinator was instituted and reminded sites about upcoming and delinquent questionnaires. The proportion of HRQL questionnaires completed were compared prior to, and following institution of the PRO coordinator. This analysis evaluated the first five assessment time points. Results There were231 families who consented to participate in the HRQL aim. Overall response rates for all questionnaires were 73–83%. At time point 1, within 14 days of chemotherapy initiation, post-PRO coordinator completion rates were significantly higher for three of four questionnaires. However, the effect was not sustained and at time point 4, one month following last chemotherapy or HSCT, completion rates were significantly lower post-PRO coordinator for all four questionnaires. Conclusion Addition of a central PRO coordinator did not result in sustained improvement in HRQL questionnaire completion rates. Efforts to improve response rates must consider other strategies. PMID:25915772

  11. Diagnostic accuracy of a combination of salivary hemoglobin levels, self-report questionnaires, and age in periodontitis screening

    PubMed Central

    2016-01-01

    Purpose This study evaluated the predictive performance of a combination of self-report questionnaires, salivary hemoglobin levels, and age as a non-invasive screening method for periodontitis. Methods The periodontitis status of 202 adults was examined using salivary hemoglobin levels, responses to 10 questions on a self-report questionnaire, and the Community Periodontal Index (CPI). The ability of those two variables and the combination thereof with age to predict the presence of CPI scores of 3–4 and 4 was assessed using logistic regression and receiver operating characteristic (ROC) curve analysis. Results CPI scores of 3–4 and 4 were present among 79.7% and 46.5% of the sample, respectively. The area under the ROC curves (AUROCs) of salivary hemoglobin levels for predicting prevalence of CPI scores of 3–4 and 4 were 0.63 and 0.67, respectively (with sensitivity values of 71% and 60% and specificity values of 56% and 72%, respectively). Two distinct sets of five questions were associated with CPI scores of 3–4 and 4, with AUROCs of 0.73 and 0.71, sensitivity values of 76% and 66%, and specificity values of 63% and 69%. The combined model incorporating both variables and age showed the best predictive performance, with AUROCs of 0.78 and 0.76, sensitivity values of 71% and 65%, and specificity values of 68% and 77% for CPI scores of 3–4 and 4, respectively. Conclusions The combination of salivary hemoglobin levels and self-report questionnaires was shown to be a valuable screening method for detecting periodontitis. PMID:26937290

  12. Concurrent Validity of a Self-Reported Physical Activity “Vital Sign” Questionnaire With Adult Primary Care Patients

    PubMed Central

    Joy, Elizabeth A.; Gren, Lisa H.; Shaw, Janet M.

    2016-01-01

    Introduction No tool currently used by primary health care providers to assess physical activity has been evaluated for its ability to determine whether or not patients achieve recommended levels of activity. The purpose of this study was to assess concurrent validity of physical activity self-reported to the brief (<30 sec) Physical Activity “Vital Sign” questionnaire (PAVS) compared with responses to the lengthier (3–5 min), validated Modifiable Activity Questionnaire (MAQ). Methods Agreement between activity reported to the PAVS and MAQ by primary care patients at 2 clinics in 2014 was assessed by using percentages and κ coefficients. Agreement consisted of meeting or not meeting the 2008 Aerobic Physical Activity Guidelines for Americans (PA Guidelines) of the US Department of Health and Human Services. We compared self-reported usual minutes per week of moderate-to-vigorous physical activity among patients at a primary care clinic in 2014 who reported to PAVS and to MAQ by using Pearson correlation and Bland–Altman plots of agreement. Results Among 269 consenting patients who reported physical activity, PAVS results agreed with those of MAQ 89.6% of the time and demonstrated good agreement in identifying patients who did not meet PA Guidelines recommendations (κ = 0.55, ρ = 0.57; P < .001). Usual minutes per week of moderate-to-vigorous physical activity reported to PAVS had a high positive correlation with the same reported to MAQ (r = 0.71; P < .001). Conclusion PAVS may be a valid tool for identifying primary care patients who need counseling about physical activity. PAVS should be assessed further for agreement with repeated objective measures of physical activity in the patient population. PMID:26851335

  13. Development of the PMPQ: A Structural Job Analysis Questionnaire for the Study of Professional and Managerial Positions. PMPQ Report No. 1.

    ERIC Educational Resources Information Center

    Mitchell, Jimmy L.; McCormick, Ernest J.

    The development and analysis of the Professional and Managerial Position Questionnaire (PMPQ) is reported. PMPQ is intended to serve as a job analysis instrument for higher level occupations than those assessed by the Position Analysis Questionnaire (PAQ). Four approaches to job analysis are described with different emphases on the requirements of…

  14. Brief Report: Methods for Collecting Sexual Behaviour Information from South African Adolescents--A Comparison of Paper versus Personal Digital Assistant Questionnaires

    ERIC Educational Resources Information Center

    Jaspan, Heather B.; Flisher, Alan J.; Myer, Landon; Mathews, Catherine; Seebregts, Chris; Berwick, Jessica R.; Wood, Robin; Bekker, Linda-Gail

    2007-01-01

    Reporting bias in adolescent behavioural research may be overcome with the use of personal digital assistants (PDA) or other computer based technologies. However, there is little insight into the use of these tools among adolescents in low resource settings. We compared self-administered paper questionnaires with PDA questionnaires to collect…

  15. Variation in outcomes in trials reporting effects of diet and lifestyle based intervention on pregnancy outcomes: a systematic review.

    PubMed

    Rogozinska, E; Fen, Y; Molyneaux, E; Khan, K S; Thangaratinam, S

    2014-07-01

    Obesity is a growing threat to women of childbearing age. Increased maternal weight or excessive weight gain in pregnancy is associated with adverse pregnancy outcomes. Interventions based on diet and physical activity minimise gestational weight gain with varied effect on a number of clinical outcomes. There is no consensus amongst the trialists on the core outcomes that need to be reported to inform the clinical care of pregnant women. The aim of this systematic review is to evaluate variation in the type and quality of outcomes reported in systematic reviews and randomised controlled trials on diet and lifestyle interventions on maternal and fetal outcomes. We will assess the correlation between the type of outcome, the quality of the studies and journal impact factor. We searched the major databases from the inception to October 2013 without language restrictions. We used current recommendations for quality of outcome reporting using a 6-point scale. The quality assessment of systematic reviews and RCTs was performed using the AMSTAR and Jadad scoring systems. Additionally we obtained journals' impact factor in the year of publication. We calculated Spearman rank coefficient to assess the correlation between the type of outcome, and study quality. An overview of outcome reporting will show the current attitude of the researchers towards outcomes of importance when conducting trials on diet and lifestyle management in pregnancy. If our abstract is accepted, we will provide the details of the results. PMID:26104628

  16. Negative Effects of Psychological Treatments: An Exploratory Factor Analysis of the Negative Effects Questionnaire for Monitoring and Reporting Adverse and Unwanted Events

    PubMed Central

    Kottorp, Anders; Boettcher, Johanna; Andersson, Gerhard; Carlbring, Per

    2016-01-01

    Research conducted during the last decades has provided increasing evidence for the use of psychological treatments for a number of psychiatric disorders and somatic complaints. However, by focusing only on the positive outcomes, less attention has been given to the potential of negative effects. Despite indications of deterioration and other adverse and unwanted events during treatment, little is known about their occurrence and characteristics. Hence, in order to facilitate research of negative effects, a new instrument for monitoring and reporting their incidence and impact was developed using a consensus among researchers, self-reports by patients, and a literature review: the Negative Effects Questionnaire. Participants were recruited via a smartphone-delivered self-help treatment for social anxiety disorder and through the media (N = 653). An exploratory factor analysis was performed, resulting in a six-factor solution with 32 items, accounting for 57.64% of the variance. The derived factors were: symptoms, quality, dependency, stigma, hopelessness, and failure. Items related to unpleasant memories, stress, and anxiety were experienced by more than one-third of the participants. Further, increased or novel symptoms, as well as lack of quality in the treatment and therapeutic relationship rendered the highest self-reported negative impact. In addition, the findings were discussed in relation to prior research and other similar instruments of adverse and unwanted events, giving credence to the items that are included. The instrument is presently available in eleven different languages and can be freely downloaded and used from www.neqscale.com. PMID:27331907

  17. Negative Effects of Psychological Treatments: An Exploratory Factor Analysis of the Negative Effects Questionnaire for Monitoring and Reporting Adverse and Unwanted Events.

    PubMed

    Rozental, Alexander; Kottorp, Anders; Boettcher, Johanna; Andersson, Gerhard; Carlbring, Per

    2016-01-01

    Research conducted during the last decades has provided increasing evidence for the use of psychological treatments for a number of psychiatric disorders and somatic complaints. However, by focusing only on the positive outcomes, less attention has been given to the potential of negative effects. Despite indications of deterioration and other adverse and unwanted events during treatment, little is known about their occurrence and characteristics. Hence, in order to facilitate research of negative effects, a new instrument for monitoring and reporting their incidence and impact was developed using a consensus among researchers, self-reports by patients, and a literature review: the Negative Effects Questionnaire. Participants were recruited via a smartphone-delivered self-help treatment for social anxiety disorder and through the media (N = 653). An exploratory factor analysis was performed, resulting in a six-factor solution with 32 items, accounting for 57.64% of the variance. The derived factors were: symptoms, quality, dependency, stigma, hopelessness, and failure. Items related to unpleasant memories, stress, and anxiety were experienced by more than one-third of the participants. Further, increased or novel symptoms, as well as lack of quality in the treatment and therapeutic relationship rendered the highest self-reported negative impact. In addition, the findings were discussed in relation to prior research and other similar instruments of adverse and unwanted events, giving credence to the items that are included. The instrument is presently available in eleven different languages and can be freely downloaded and used from www.neqscale.com. PMID:27331907

  18. Interactive voice response and web-based questionnaires for population-based infectious disease reporting.

    PubMed

    Bexelius, Christin; Merk, Hanna; Sandin, Sven; Nyrén, Olof; Kühlmann-Berenzon, Sharon; Linde, Annika; Litton, Jan-Eric

    2010-10-01

    The authors aimed to evaluate the web and an Interactive Voice Response (IVR) phone service as vehicles in population-based infectious disease surveillance. Fourteen thousand subjects were randomly selected from the Swedish population register and asked to prospectively report all respiratory tract infections, including Influenza-like Illness (ILI-clinical symptoms indicative of influenza but no laboratory confirmation), immediately as they occurred during a 36-week period starting October 2007. Participants were classified as belonging to the web or IVR group based on their choice of technology for initial registration. In all, 1,297 individuals registered via IVR while 2,044 chose the web. The latter were more often young and well-educated than those registered via IVR. Overall, 52% of the participants reported at least one infection episode. The risk of an infectious disease report was 14% (95% CI: 6, 22%) higher in the web group than in the IVR group. For ILI the excess was 27% (95% CI: 11, 47%). After adjustments for socio-demographic factors, statistically non-significant excesses of 1 and 8% remained, indicating trivial differences potentially attributable to the two reporting techniques. With attention to confounding, it should be possible to combine the web and IVR for simple reporting of infectious disease symptoms. PMID:20596884

  19. The distinction of 'psychosomatogenic family types' based on parents' self reported questionnaire information: a cluster analysis.

    PubMed

    Rousseau, Sofie; Grietens, Hans; Vanderfaeillie, Johan; Ceulemans, Eva; Hoppenbrouwers, Karel; Desoete, Annemie; Van Leeuwen, Karla

    2014-06-01

    The theory of 'psychosomatogenic family types' is often used in treatment of somatizing adolescents. This study investigated the validity of distinguishing 'psychosomatogenic family types' based on parents' self-reported family features. The study included a Flemish general population sample of 12-year olds (n = 1428). We performed cluster analysis on 3 variables concerning parents' self-reported problems in family functioning. The distinguished clusters were examined for differences in marital problems, parental emotional problems, professional help for family members, demographics, and adolescents' somatization. Results showed the existence of 5 family types: 'chaotic family functioning,' 'average amount of family functioning problems,' 'few family functioning problems,' 'high amount of support and communication problems,' and 'high amount of sense of security problems' clusters. Membership of the 'chaotic family functioning' and 'average amount of family functioning problems' cluster was significantly associated with higher levels of somatization, compared with 'few family functioning problems' cluster membership. Among additional variables, only marital and parental emotional problems distinguished somatization relevant from non relevant clusters: parents in 'average amount of family functioning problems' and 'chaotic family functioning' clusters reported higher problems. The data showed that 'apparently perfect' or 'enmeshed' patterns of family functioning may not be assessed by means of parent report as adopted in this study. In addition, not only adolescents from 'extreme' types of family functioning may suffer from somatization. Further, professionals should be careful assuming that families in which parents report average to high amounts of family functioning problems also show different demographic characteristics. PMID:24749676

  20. Present status and self-reported diseases of the Korean atomic bomb survivors: a mail questionnaire survey.

    PubMed

    Jhun, Hyung-Joon; Ju, Young-Su; Kim, Jung-Bum; Kim, Jin-Kook

    2005-01-01

    Many Koreans were forced to move to Japan while Korea was occupied by Japan. Consequently, when the atomic bombs were dropped on Hiroshima and Nagasaki an estimated 40,000 Koreans died and 30,000 survived. In 2004, 2,235 Koreans were registered as A-bomb survivors in South Korea. A mail questionnaire survey to evaluate the present status and self-reported diseases of the Korean survivors was conducted. In total, 1,256 questionnaires were returned and analysed. The most frequent chronic diseases reported by Korean survivors were hypertension (40.1 per cent), peptic ulcer disease (25.7 per cent), anaemia (23.3 per cent) and cataracts (23.1 per cent). The most frequent malignant diseases were stomach cancer (1.9 per cent), colon cancer (0.5 per cent) and leukaemia/multiple myeloma (0.4 per cent). This study suggests that further investigations are needed into the health concerns of the survivors and into health protection measures. PMID:16180735

  1. Begging the Questionnaire: Instrument Effect on Readers' Responses to a Self-Report Checklist.

    ERIC Educational Resources Information Center

    Allan, Alastair I. C. G.

    1995-01-01

    This study investigated the validity of having English-as-a-Second-Language test-takers select from a checklist the strategies they believe they use when answering multiple choice reading comprehension questions. Results suggest that the self-report checklist discussed above exercised to an unknown extent an instrument effect on the readers who…

  2. Retrospective Assessment of Behavioral Inhibition in Infants and Toddlers: Development of a Parent Report Questionnaire

    ERIC Educational Resources Information Center

    Gensthaler, A.; Mohler, E.; Resch, F.; Paulus, F.; Schwenck, C.; Freitag, C. M.; Goth, K.

    2013-01-01

    A behaviorally inhibited temperament in early childhood has been identified as a potential risk factor for anxiety disorders in children and adolescents. The purpose of our investigation was the development and evaluation of the factor structure, reliability and validity of the first retrospective parent report measure to assess behavioral…

  3. The relationship between pain severity and patient-reported outcomes among patients with chronic low back pain in Japan

    PubMed Central

    Montgomery, William; Vietri, Jeffrey; Shi, Jing; Ogawa, Kei; Kariyasu, Sawako; Alev, Levent; Nakamura, Masaya

    2016-01-01

    Objective The aim of this study was to quantify the impact of pain severity on patient-reported outcomes among individuals diagnosed with chronic low back pain in Japan. Methods Data were provided by the 2012 Japan National Health and Wellness Survey (N=29,997), a web-based survey of individuals in Japan aged ≥18 years. This analysis included respondents diagnosed with low back pain of ≥3-month duration. Measures included the revised Medical Outcomes Study 36-Item Short-Form Survey Instrument, the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7 scale, the Work Productivity and Activity Impairment: General Health questionnaire, and self-reported all-cause health care visits (6 months). Generalized linear models were used to assess the relationship between outcomes and severity of pain in the past week as reported on a numeric rating scale ranging from 0 (no pain) to 10 (pain as bad as you can imagine), controlling for length of diagnosis, sociodemographics, and general health characteristics. Results A total of 290 respondents were included in the analysis; mean age was 56 years, 41% were females, and 56% were employed. Pain severity was 3/10 for the first quartile, 5/10 for the median, and 7/10 for the third quartile of this sample. Increasing severity was associated with lower scores for mental and physical component summaries and Short-Form 6D health utility, higher depression (Patient Health Questionnaire-9) and anxiety (Generalized Anxiety Disorder-7) scores, greater absenteeism and presenteeism, greater activity impairment, and more health care provider visits (all P<0.0001). Conclusion The impact of chronic low back pain on health-related quality of life, depression and anxiety symptoms, impairment to work and daily activities, and health care use increases with the severity of pain. Interventions reducing the severity of pain may improve numerous health outcomes even if the pain cannot be eliminated. PMID:27330326

  4. Feasibility of Frequent Patient-Reported Outcome Surveillance in Patients Undergoing Hematopoietic Cell Transplantation

    PubMed Central

    Wood, William A.; Deal, Allison M.; Abernethy, Amy; Basch, Ethan; Battaglini, Claudio; Kim, Yoon Hie; Whitley, Julia; Shatten, Charlotte; Serody, Jon; Shea, Thomas; Reeve, Bryce B.

    2012-01-01

    Patient-reported outcomes (PROs), including symptoms and health-related quality of life (HRQOL), provide a patient-centered description of hematopoietic cell transplantation (HCT)-related toxicity. These data characterize the patient experience after HCT and may have prognostic usefulness for long-term outcomes after HCT. We conducted a study of 32 patients after HCT (10 autologous HCT recipients, 11 full-intensity conditioning allogeneic HCT recipients, and 11 reduced-intensity conditioning allogeneic HCT recipients) to determine the feasibility of weekly electronic PRO collection from HCT until day (D) + 100. We used questions from the PRO version of the Common Terminology Criteria for Adverse Events to capture symptoms, and the Patient-Reported Outcomes Measurement Information System Global Health scale to measure physical and mental HRQOL. The vast majority (94%) of patients used the electronic PRO system, with only 6% opting for paper-and-pencil only. The median weekly percentage of participants who completed the surveys was 100% in all cohorts through hospital discharge, and remained 100% for the autologous HCT and reduced-intensity allogeneic HCT cohorts through D+100. Patients were satisfied with the electronic system, giving high marks for readability, comfort, and questionnaire length. Symptom severity varied by absolute level and type of symptom across the 3 cohorts, with the full-intensity allogeneic HCT cohort exhibiting the greatest median overall symptom severity, peaking at D+7. Median physical health HRQOL scores decreased with time in the 3 cohorts, and HRQOL was generally correlated with overall symptom severity. Our results demonstrate the feasibility of frequent electronic PROs in the early post-HCT period. Future studies in larger populations to explore predictive models using frequent PRO data for outcomes, including long-term HRQOL and survival, are warranted. PMID:23253558

  5. Patient-Reported Outcomes Are Changing the Landscape in Oncology Care: Challenges and Opportunities for Payers

    PubMed Central

    Zagadailov, Erin; Fine, Michael; Shields, Alan

    2013-01-01

    Background A patient-reported outcome (PRO) is a subjective report that comes from a patient without interpretation by a clinician. Because of the increasingly significant role of PROs in the development and evaluation of new medicines, the US Food and Drug Administration (FDA) issued a formal guidance to describe how PRO instruments will be reviewed and evaluated with respect to claims in approved medical product labeling. Meanwhile, PROs continue to appear in oncology clinical trials more frequently; however, it is unclear how payers and policymakers can use PRO data in the context of decision-making for cancer treatments. Objective The objective of this article is to discuss the challenges and opportunities of incorporating oncology-related PRO data into payer decision-making. Discussion Payer concerns with PRO instruments are often related to issues regarding measurement, relevance, quality, and interpretability of PROs. Payers may dismiss PROs that do not independently predict improved outcomes. The FDA guidance released in 2009 demonstrates, as evidenced by the case of ruxolitinib, how PRO questionnaires can be generated in a relevant, trustworthy, and meaningful way, which provides an opportunity for payers and policy decision makers to focus on how to use PRO data in their decision-making. This is particularly relevant in oncology, where a recent and sizable number of clinical trials include PRO measures. Conclusion As an increasing number of oncology medications enter the market with product labeling claims that contain PRO data, payers will need to better familiarize themselves with the opportunities associated with PRO questionnaires when making coverage decisions. PRO measures will continue to provide valuable information regarding the risk–benefit profile of novel agents. As such, PRO measures may provide evidence that should be considered in payers' decisions and discussions; however, the formal role of PROs and the pertinence of PROs in decision

  6. Patient-reported outcome measures in inflammatory bowel disease

    PubMed Central

    El-Matary, Wael

    2014-01-01

    Patient-reported outcome measures (PROMs) are increasingly used in both research and clinical health settings. With the recent development of United States Food and Drug Administration guidance on PROMs, more attention is being devoted to their role and importance in health care. Several methodological challenges in the development, validation and implementation of PROMs must be resolved to ensure their appropriate utilization and interpretation. The present review discusses recent developments and updates in PROMs, with specific focus on the area of inflammatory bowel disease. PMID:25390615

  7. Utility of Washington Early Recognition Center Self-Report Screening Questionnaires in the Assessment of Patients with Schizophrenia and Bipolar Disorder

    PubMed Central

    Hsieh, Christina J.; Godwin, Douglass; Mamah, Daniel

    2016-01-01

    Early identification and treatment are associated with improved outcomes in bipolar disorder (BPD) and schizophrenia (SCZ). Screening for the presence of these disorders usually involves time-intensive interviews that may not be practical in settings where mental health providers are limited. Thus, individuals at earlier stages of illness are often not identified. The Washington Early Recognition Center Affectivity and Psychosis (WERCAP) screen is a self-report questionnaire originally developed to identify clinical risk for developing bipolar or psychotic disorders. The goal of the current study was to investigate the utility of the WERCAP Screen and two complementary questionnaires, the WERC Stress Screen and the WERC Substance Screen, in identifying individuals with established SCZ or BPD. Participants consisted of 35 BPD and 34 SCZ patients, as well as 32 controls (CON), aged 18–30 years. Univariate analyses were used to test for score differences between groups. Logistic regression and receiver operating characteristic (ROC) curves were used to identify diagnostic predictors. Significant group differences were found for the psychosis section of the WERCAP (pWERCAP; p < 0.001), affective section of the WERCAP (aWERCAP; p = 0.001), and stress severity (p = 0.027). No significant group differences were found in the rates of substance use as measured by the WERC Substance Screen (p = 0.267). Only the aWERCAP and pWERCAP scores were useful predictors of diagnostic category. ROC curve analysis showed the optimal cut point on the aWERCAP to identify BPD among our participant groups was a score of >20 [area under the curve (AUC): 0.87; sensitivity: 0.91; specificity: 0.71], while that for the pWERCAP to identify SCZ was a score of >13 (AUC: 0.89; sensitivity: 0.88; specificity: 0.82). These results indicate that the WERCAP Screen may be useful in screening individuals for BPD and SCZ and that identifying stress and substance-use severity can be

  8. Utility of Washington Early Recognition Center Self-Report Screening Questionnaires in the Assessment of Patients with Schizophrenia and Bipolar Disorder.

    PubMed

    Hsieh, Christina J; Godwin, Douglass; Mamah, Daniel

    2016-01-01

    Early identification and treatment are associated with improved outcomes in bipolar disorder (BPD) and schizophrenia (SCZ). Screening for the presence of these disorders usually involves time-intensive interviews that may not be practical in settings where mental health providers are limited. Thus, individuals at earlier stages of illness are often not identified. The Washington Early Recognition Center Affectivity and Psychosis (WERCAP) screen is a self-report questionnaire originally developed to identify clinical risk for developing bipolar or psychotic disorders. The goal of the current study was to investigate the utility of the WERCAP Screen and two complementary questionnaires, the WERC Stress Screen and the WERC Substance Screen, in identifying individuals with established SCZ or BPD. Participants consisted of 35 BPD and 34 SCZ patients, as well as 32 controls (CON), aged 18-30 years. Univariate analyses were used to test for score differences between groups. Logistic regression and receiver operating characteristic (ROC) curves were used to identify diagnostic predictors. Significant group differences were found for the psychosis section of the WERCAP (pWERCAP; p < 0.001), affective section of the WERCAP (aWERCAP; p = 0.001), and stress severity (p = 0.027). No significant group differences were found in the rates of substance use as measured by the WERC Substance Screen (p = 0.267). Only the aWERCAP and pWERCAP scores were useful predictors of diagnostic category. ROC curve analysis showed the optimal cut point on the aWERCAP to identify BPD among our participant groups was a score of >20 [area under the curve (AUC): 0.87; sensitivity: 0.91; specificity: 0.71], while that for the pWERCAP to identify SCZ was a score of >13 (AUC: 0.89; sensitivity: 0.88; specificity: 0.82). These results indicate that the WERCAP Screen may be useful in screening individuals for BPD and SCZ and that identifying stress and substance-use severity can be

  9. Core Outcomes and Common Data Elements in Chronic Subdural Hematoma: A Systematic Review of the Literature Focusing on Reported Outcomes.

    PubMed

    Chari, Aswin; Hocking, Katie C; Broughton, Ellie; Turner, Carole; Santarius, Thomas; Hutchinson, Peter J; Kolias, Angelos G

    2016-07-01

    The plethora of studies in chronic subdural hematoma (CSDH) has not resulted in the development of an evidence-based treatment strategy, largely due to heterogeneous outcome measures that preclude cross-study comparisons and guideline development. This study aimed to identify and quantify the heterogeneity of outcome measures reported in the CSDH literature and to build a case for the development of a consensus-based core outcome set. This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement and was registered with the PROSPERO international prospective register of systematic reviews (CRD42014007266). All full-text English language studies with >10 patients (prospective) or >100 patients (retrospective) published after 1990 examining clinical outcomes in CSDH were eligible for inclusion. One hundred two eligible studies were found. There were 14 (13.7%) randomized controlled trials, one single arm trial (1.0%), 25 (24.5%) cohort comparison studies, and 62 (60.8%) prospective or retrospective cohort studies. Outcome domains reported by the studies included mortality (63.8% of included studies), recurrence (94.1%), complications (48.0%), functional outcomes (40.2%), and radiological (38.2%) outcomes. There was significant heterogeneity in the definitions of the outcome measures, as evidenced by the seven different definitions of the term "recurrence," with no definition given in 19 studies. The time-points of assessment for all the outcome domains varied greatly from inpatient/hospital discharge to 18 months. This study establishes and quantifies the heterogeneity of outcome measure reporting in CSDH and builds the case for the development of a robust consensus-based core outcome set for future studies to adhere to as part of the Core Outcomes and Common Data Elements in CSDH (CODE-CSDH) project. PMID:26295586

  10. Patient-reported outcome measures in arthroplasty registries.

    PubMed

    Rolfson, Ola; Eresian Chenok, Kate; Bohm, Eric; Lübbeke, Anne; Denissen, Geke; Dunn, Jennifer; Lyman, Stephen; Franklin, Patricia; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Dawson, Jill

    2016-07-01

    The International Society of Arthroplasty Registries (ISAR) Steering Committee established the Patient-Reported Outcome Measures (PROMs) Working Group to convene, evaluate, and advise on best practices in the selection, administration, and interpretation of PROMs and to support the adoption and use of PROMs for hip and knee arthroplasty in registries worldwide. The 2 main types of PROMs include generic (general health) PROMs, which provide a measure of general health for any health state, and specific PROMs, which focus on specific symptoms, diseases, organs, body regions, or body functions. The establishment of a PROM instrument requires the fulfillment of methodological standards and rigorous testing to ensure that it is valid, reliable, responsive, and acceptable to the intended population. A survey of the 41 ISAR member registries showed that 8 registries administered a PROMs program that covered all elective hip or knee arthroplasty patients and 6 registries collected PROMs for sample populations; 1 other registry had planned but had not started collection of PROMs. The most common generic instruments used were the EuroQol 5 dimension health outcome survey (EQ-5D) and the Short Form 12 health survey (SF-12) or the similar Veterans RAND 12-item health survey (VR-12). The most common specific PROMs were the Hip disability and Osteoarthritis Outcome Score (HOOS), the Knee injury and Osteoarthritis Outcome Score (KOOS), the Oxford Hip Score (OHS), the Oxford Knee Score (OKS), the Western Ontario and McMaster Universities Arthritis Index (WOMAC), and the University of California at Los Angeles Activity Score (UCLA). PMID:27168175

  11. Systematic review of the measurement properties of self-report physical activity questionnaires in healthy adult populations

    PubMed Central

    Silsbury, Zoë; Goldsmith, Robert; Rushton, Alison

    2015-01-01

    Objective This systematic review evaluated the measurement properties of current self-report physical activity questionnaires (SRPAQs) completed within healthy adult populations. Design Two reviewers independently searched seven electronic databases and hand searched for articles investigating measurement properties of a SRPAQ evaluating physical activity over the previous 6 months. Articles published from 1 May 2001 to 4 December 2014 were systematically screened and eligible studies were not limited to English language sources. Articles investigating specific race, gender or socioeconomic populations were excluded. Results 10 studies investigating 10 SRPAQs were included. The methodological quality of the included studies was evaluated using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) and ranged from ‘poor’ to ‘good’. The Recent Physical Activity Questionnaire, International Physical Activity Questionnaires and Physical Activity Assessment Tool demonstrated good/excellent test–retest reliability (intra-class coefficient (ICC)=0.76, p<0.0001; r=0.627–0.91; r=0.618, p<0.001, respectively), but variable criterion validity (r=0.67, p<0.0001; r=−0.02–0.43; r=0.392, p<0.01, respectively). The single-item measure showed significant criterion validity against an accelerometer (for moderate to vigorous physical activity (MVPA) k=0.23, 95% CI 0.05 to 0.41; and physical activity ≥10 min bouts 0.39 (95% CI 0.14 to 0.64). Construct validity of the six-point scale and Human Activity Profile varied significantly with age, marital status and presence of comorbidities (p<0.05, <0.01, <0.000 and p<0.05, <0.05, <0.000, respectively). The 1 week Godlin-Shephard recall demonstrated ‘moderate’ validity with the gold standard measure of accelerometry (r=0.43). Conclusions Inconclusive evidence exists. Further investigation of criterion validity of the short-form International Physical Activity Questionnaire is

  12. Assessing Repetitive Negative Thinking Using Categorical and Transdiagnostic Approaches: A Comparison and Validation of Three Polish Language Adaptations of Self-Report Questionnaires.

    PubMed

    Kornacka, Monika; Buczny, Jacek; Layton, Rebekah L

    2016-01-01

    Repetitive negative thinking (RNT) is a transdiagnostic process involved in the risk, maintenance, and relapse of serious conditions including mood disorders, anxiety, eating disorders, and addictions. Processing mode theory provides a theoretical model to assess, research, and treat RNT using a transdiagnostic approach. Clinical researchers also often employ categorical approaches to RNT, including a focus on depressive rumination or worry, for similar purposes. Three widely used self-report questionnaires have been developed to assess these related constructs: the Ruminative Response Scale (RRS), the Perseverative Thinking Questionnaire (PTQ), and the Mini-Cambridge Exeter Repetitive Thought Scale (Mini-CERTS). Yet these scales have not previously been used in conjunction, despite useful theoretical distinctions only available in Mini-CERTS. The present validation of the methods in a Polish speaking population provides psychometric parameters estimates that contribute to current efforts to increase reliable replication of theoretical outcomes. Moreover, the following study aims to present particular characteristics and a comparison of the three methods. Although there has been some exploration of a categorical approach, the comparison of transdiagnostic methods is still lacking. These methods are particularly relevant for developing and evaluating theoretically based interventions like concreteness training, an emerging field of increasing interest, which can be used to address the maladaptive processing mode in RNT that can lead to depression and other disorders. Furthermore, the translation of these measures enables the examination of possible cross-cultural structural differences that may lead to important theoretical progress in the measurement and classification of RNT. The results support the theoretical hypothesis. As expected, the dimensions of brooding, general repetitive negative thinking, as well as abstract analytical thinking, can all be classified

  13. Assessing Repetitive Negative Thinking Using Categorical and Transdiagnostic Approaches: A Comparison and Validation of Three Polish Language Adaptations of Self-Report Questionnaires

    PubMed Central

    Kornacka, Monika; Buczny, Jacek; Layton, Rebekah L.

    2016-01-01

    Repetitive negative thinking (RNT) is a transdiagnostic process involved in the risk, maintenance, and relapse of serious conditions including mood disorders, anxiety, eating disorders, and addictions. Processing mode theory provides a theoretical model to assess, research, and treat RNT using a transdiagnostic approach. Clinical researchers also often employ categorical approaches to RNT, including a focus on depressive rumination or worry, for similar purposes. Three widely used self-report questionnaires have been developed to assess these related constructs: the Ruminative Response Scale (RRS), the Perseverative Thinking Questionnaire (PTQ), and the Mini-Cambridge Exeter Repetitive Thought Scale (Mini-CERTS). Yet these scales have not previously been used in conjunction, despite useful theoretical distinctions only available in Mini-CERTS. The present validation of the methods in a Polish speaking population provides psychometric parameters estimates that contribute to current efforts to increase reliable replication of theoretical outcomes. Moreover, the following study aims to present particular characteristics and a comparison of the three methods. Although there has been some exploration of a categorical approach, the comparison of transdiagnostic methods is still lacking. These methods are particularly relevant for developing and evaluating theoretically based interventions like concreteness training, an emerging field of increasing interest, which can be used to address the maladaptive processing mode in RNT that can lead to depression and other disorders. Furthermore, the translation of these measures enables the examination of possible cross-cultural structural differences that may lead to important theoretical progress in the measurement and classification of RNT. The results support the theoretical hypothesis. As expected, the dimensions of brooding, general repetitive negative thinking, as well as abstract analytical thinking, can all be classified

  14. Patient-Reported Outcomes in Metastatic Breast Cancer: A Review of Industry-Sponsored Clinical Trials

    PubMed Central

    Krohe, Meaghan; Hao, Yanni; Lamoureux, Roger E.; Galipeau, Nina; Globe, Denise; Foley, Catherine; Mazar, Iyar; Solomon, Jeffrey; Shields, Alan L.

    2016-01-01

    INTRODUCTION Patient-reported outcome (PRO) measures serve to capture vital patient information not otherwise obtained by primary study endpoints. This paper examines how PROs are utilized as endpoints in industry-sponsored metastatic breast cancer clinical trials. METHODS A search was conducted in the clinicaltrials.gov web site for trials involving common treatments for metastatic breast cancer. Thirty-eight clinical trials were identified which included a PRO endpoint in the study, and data were extracted and summarized. RESULTS Overall, 17 unique PRO questionnaires and 14 concepts of measurement were identified as secondary or exploratory endpoints. The Functional Assessment of Cancer Therapy—Breast was the most frequently utilized questionnaire, commonly implemented to assess quality of life. The EORTC QLQ-C30 was also frequently used to measure quality of life or pain. CONCLUSION This review shares insights into the role of PROs in trials for metastatic breast cancer from which treatment developers and other stakeholders can enhance successful implementation of the patient voice into future trials. PMID:27441001

  15. Predictive validity of self-report questionnaires in the assessment of autism spectrum disorders in adults.

    PubMed

    Sizoo, Bram B; Horwitz, E H; Teunisse, J P; Kan, C C; Vissers, Ctwm; Forceville, Ejm; Van Voorst, Ajp; Geurts, H M

    2015-10-01

    While various screening instruments for autism spectrum disorders are widely used in diagnostic assessments, their psychometric properties have not been simultaneously evaluated in the outpatient setting where these instruments are used most. In this study, we tested the Ritvo Autism Asperger Diagnostic Scale-Revised and two short versions of the Autism-Spectrum Quotient, the AQ-28 and AQ-10, in 210 patients referred for autism spectrum disorder assessment and in 63 controls. Of the 210 patients, 139 received an autism spectrum disorder diagnosis and 71 received another psychiatric diagnosis. The positive predictive values indicate that these tests correctly identified autism spectrum disorder patients in almost 80% of the referred cases. However, the negative predictive values suggest that only half of the referred patients without autism spectrum disorder were correctly identified. The sensitivity and specificity of each of these instruments were much lower than the values reported in the literature. In this study, the sensitivity of the Ritvo Autism Asperger Diagnostic Scale-Revised was the highest (73%), and the Autism-Spectrum Quotient short forms had the highest specificity (70% and 72%). Based on the similar area under the curve values, there is no clear preference for any of the three instruments. None of these instruments have sufficient validity to reliably predict a diagnosis of autism spectrum disorder in outpatient settings. PMID:26088060

  16. Patient-reported outcomes in lupus clinical trials with biologics.

    PubMed

    Annapureddy, N; Devilliers, H; Jolly, M

    2016-09-01

    Therapeutic advances in systemic lupus erythematosus (SLE) are greatly needed. Despite advances in our knowledge of pathogenesis of the disease and targets, treatment remains a significant challenge. Finding effective and relatively safe medications remains one of the top priorities. SLE significantly impairs quality of life (QoL), and patient-reported outcomes (PROs) measure a unique aspect of the disease not captured by disease activity. Inclusion of PRO measurements is encouraged in SLE clinical trials, as they allow capturing benefits of a proposed intervention in language patients can relate to and in areas deemed pertinent and important to and by patients. Availability of patient-reported and patient-centric clinical trials data may facilitate patients in informed and shared decision making, and allow for comparative cost-effectiveness evaluation for future resource allocation and reimbursements. Herein we review clinical trials with biologic therapies wherein PRO tools were included in the study design. PMID:27497256

  17. Assessment of Patient Reported Outcomes (PROs) in Melanoma Patients

    PubMed Central

    Cormier, Janice N.; Askew, Robert L.

    2010-01-01

    SYNOPSIS Assessment of patient reported outcomes (PROs) has been shown to provide important information to assist with clinical decision-making. There has been significant progress in the field of PROs over the last two decades with the introduction of a variety of validated disease- and symptom-specific instruments. The Functional Assessment of Cancer Therapy-Melanoma (FACT-M) is a melanoma-specific module to accompany the FACT-General which has been validated to assess health-related quality of life (HRQOL) for patients with all stages of melanoma. Melanoma-specific health state utilities, which are essential for calculating quality adjusted life years and performing cost-effectiveness studies, have also been reported from a number of studies. Assessment of PROs should be incorporated into routine clinical practice to inform clinicians and researchers of the patient perspective for clinical decision-making and to evaluate the effects of psychosocial and medical interventions. PMID:21111967

  18. Designing of Intelligent Multilingual Patient Reported Outcome System (IMPROS)

    PubMed Central

    Pourasghar, Faramarz; Partovi, Yeganeh

    2015-01-01

    Background: By self-reporting outcome procedure the patients themselves record disease symptoms outside medical centers and then report them to medical staff in specific periods of time. One of the self-reporting methods is the application of interactive voice response (IVR), in which some pre-designed questions in the form of voice tracks would be played and then the caller responses the questions by pressing phone’s keypad bottoms. Aim: The present research explains the main framework of such system designing according to IVR technology that is for the first time designed and administered in Iran. Methods: Interactive Voice Response system was composed by two main parts of hardware and software. Hardware section includes one or several digital phone lines, a modem card with voice playing capability and a PC. IVR software on the other hand, acts as an intelligent control center, records call information and controls incoming data. Results: One of the main features of the system is its capability to be administered in common PCs, utilizing simple and cheap modems, high speed to take responses and it’s appropriateness to low literate patients. The system is applicable for monitoring chronic diseases, cancer and also in psychological diseases and can be suitable for taking care of elders and Children who require long term cares. Other features include user-friendly, decrease in direct and indirect costs of disease treatment and enjoying from high level of security to access patients’ profiles. Conclusions: Intelligent multilingual patient reported outcome system (IMPROS) by controlling diseases gives the opportunity to patients to have more participation during treatment and it improves mutual interaction between patient and medical staff. Moreover it increases the quality of medical services, Additional to empowering patients and their followers. PMID:26635441

  19. Development and initial validation of a traditional Chinese medicine symptom-specific outcome measure: a Zheng-related atopic dermatitis symptom questionnaire (ZRADSQ)

    PubMed Central

    2013-01-01

    Background Zheng represents pattern differentiation in Traditional Chinese Medicine (TCM), as the basic unit and a key concept in TCM therapeutic theory, is based on the physiology and pathology of TCM. None of the outcome measurements of atopic dermatitis (AD) are Zheng-specific. The effectiveness of TCM is likely to be underestimated without a Zheng-related symptom-specific instrument. The aim of this study was to develop an instrument for measuring the Zheng-related symptom-specific status of patients with AD. Methods We followed standard methodology to develop the instrument, including item generation and selection, item reduction and presentation, and pretesting, and recruited 188 patients with AD involved in a six-center randomized-controlled trial (ChiCTR-TRC-08000156) to validate the questionnaire. We conducted construct validity, reliability, and responsiveness analysis. The standardized effect size (SES) and standardized response mean (SRM) were used to calculate the responsiveness of additional items and the total score for the rating items. Results ZRADSQ has 15 items, with 12 rating items and 3 additional items. The 12 rating items fall within three domains: AD symptoms (n = 6 items); Heat (n = 4 items) and Mood (n = 2 items). Confirmatory factor analysis provided good support for a three-factor model (d.f. = 51, x2=97.11, RMSEA = 0.07, CFI = 0.96), and the Pearson’s correlation coefficient between ZRADSQ and Severity Scoring of Atopic Dermatitis (SCORAD) was 0.40 (P < 0.001). The reliability was also good, with a Cronbach’s alpha value for ZRADSQ of 0.84, a split-half coefficient of 0.75, and a test-retest reliability coefficient of 0.98. The standardized effect size and standardized response mean were close to or larger than 1, which indicated moderate to good responsiveness. Conclusions The ZRADSQ demonstrates promising reliability, validity, and responsiveness. It can be used to determine whether Zheng-specific or

  20. Musculoskeletal symptoms amongst clinical radiologists and the implications of reporting environment ergonomics--a multicentre questionnaire study.

    PubMed

    Rodrigues, Jonathan C L; Morgan, Steven; Augustine, Katharine; Clague, Gavin; Pearce, Tim; Pollentine, Adrian; Wallis, Adam; Wilson, David; McCoubrie, Paul

    2014-04-01

    This multicentre study aimed to assess compliance of the reporting environment with best ergonomic practice and to determine the prevalence of musculoskeletal symptoms related to working as a radiologist. All 148 radiology trainees and consultants in 10 hospitals across the region were invited to complete a musculoskeletal symptoms and reporting ergonomics questionnaire. Best ergonomic reporting practice was defined, following literature review, as being able to alter the following: monitor, desk, chair and armrest height, chair back support, ambient light, and temperature. The frequency that these facilities were available and how often they were used was determined. One hundred and twenty-three out of 148 (83%) radiologists responded, and 38% reported radiology-associated occupational injury. Lower back discomfort was the commonest radiology associated musculoskeletal symptom (41%). Only 13% of those with occupational injury sought the advice of occupational health. No reporting environments conformed completely to best ergonomic practice. Where certain facilities were available, less than a third of radiologists made personal ergonomic adjustments prior to starting a reporting session. Radiologists who had good self-assessed knowledge of best ergonomic practice had significantly less back discomfort than those with poor self-assessed knowledge (P < 0.005). We demonstrated high prevalence of musculoskeletal symptoms amongst radiologists. Poor compliance of the reporting environment with best ergonomic practice, in combination with our other findings of a low level of ergonomic awareness, low rates of making ergonomic adjustments and seeking appropriate help, may be implicated. We hope this study raises awareness of this issue and helps prevent long-term occupational injury amongst radiologists from poor ergonomic practice. PMID:24113846

  1. Upper Airway Stimulation for Obstructive Sleep Apnea: Self-Reported Outcomes at 24 Months

    PubMed Central

    Soose, Ryan J.; Woodson, B. Tucker; Gillespie, M. Boyd; Maurer, Joachim T.; de Vries, Nico; Steward, David L.; Strohl, Kingman P.; Baskin, Jonathan Z.; Padhya, Tapan A.; Badr, M. Safwan; Lin, Ho-sheng; Vanderveken, Olivier M.; Mickelson, Sam; Chasens, Eileen; Strollo, Patrick J.

    2016-01-01

    Objectives: To evaluate the long-term (24-mo) effect of cranial nerve upper airway stimulation (UAS) therapy on patient-centered obstructive sleep apnea (OSA) outcome measures. Methods: Prospective, multicenter, cohort study of 126 patients with moderate to severe OSA who had difficulty adhering to positive pressure therapy and received the surgically implanted UAS system. Outcomes were measured at baseline and postoperatively at 12 mo and 24 mo, and included self- and bedpartner-report of snoring intensity, Epworth Sleepiness Scale (ESS), and Functional Outcomes of Sleep Questionnaire (FOSQ). Additional analysis included FOSQ subscales, FOSQ-10, and treatment effect size. Results: Significant improvement in mean FOSQ score was observed from baseline (14.3) to 12 mo (17.3), and the effect was maintained at 24 mo (17.2). Similar improvements and maintenance of effect were seen with all FOSQ subscales and FOSQ-10. Subjective daytime sleepiness, as measured by mean ESS, improved significantly from baseline (11.6) to 12 mo (7.0) and 24 mo (7.1). Self-reported snoring severity showed increased percentage of “no” or “soft” snoring from 22% at baseline to 88% at 12 mo and 91% at 24 mo. UAS demonstrated large effect size (> 0.8) at 12 and 24 mo for overall ESS and FOSQ measures, and the effect size compared favorably to previously published effect size with other sleep apnea treatments. Conclusions: In a selected group of patients with moderate to severe OSA and body mass index ≤ 32 kg/m2, hypoglossal cranial nerve stimulation therapy can provide significant improvement in important sleep related quality-of-life outcome measures and the effect is maintained across a 2-y follow-up period. Citation: Soose RJ, Woodson BT, Gillespie MB, Maurer JT, de Vries N, Steward DL, Strohl KP, Baskin JZ, Padhya TA, Badr MS, Lin H, Vanderveken OM, Mickelson S, Chasens E, Strollo Jr PJ, STAR Trial Investigators. Upper airway stimulation for obstructive sleep apnea: self-reported

  2. Patient Acceptable Symptom State in Self-Report Questionnaires and Composite Clinical Disease Index for Assessing Rheumatoid Arthritis Activity: Identification of Cut-Off Points for Routine Care

    PubMed Central

    Salaffi, Fausto; Carotti, Marina; Gutierrez, Marwin; Di Carlo, Marco; De Angelis, Rossella

    2015-01-01

    Objective. To provide information on the value of Patient Acceptable Symptom State (PASS) in rheumatoid arthritis (RA) by the identification of PASS thresholds for patient-reported outcomes (PROs) composite scores. Methods. The characteristics of RA patients with affirmative and negative assignment to PASS were compared. Contributors to physician response were estimated by logistic regression models and PASS thresholds by the 75th percentile and receiver-operating characteristic (ROC) curve methods. Results. 303 RA patients completed the study. All PROs were different between the PASS (+) and PASS (−) groups (p < 0.0001). The thresholds with the 75th percentile approach were 2.0 for the RA Impact of Disease (RAID) score, 2.5 for the PRO-CLinical ARthritis Activity (PRO-CLARA) index, and 1.0 for the Recent-Onset Arthritis Disability (ROAD) questionnaire. The cut-off values for Clinical Disease Activity Index (CDAI) were in the moderate range of disease activity. Assessing the size of the logistic regression coefficients, the strongest predictors of PASS were the disease activity (p = 0.0007) and functional state level (0.006). Conclusion. PASS thresholds were relatively high and many patients in PASS had moderate disease activity states according to CDAI. Factors such as disease activity and physical function may influence a negative PASS. PMID:26167506

  3. The validity of questionnaire self-report of psychopathology and parent-child relationship quality in juvenile delinquents with psychiatric disorders.

    PubMed

    Breuk, R E; Clauser, C A C; Stams, G J J M; Slot, N W; Doreleijers, T A H

    2007-10-01

    The present study focuses on the validity of questionnaire self-report of psychopathology and parent-child relationship quality for juvenile delinquents with severe behavioural and psychiatric disorders by comparing information derived from questionnaire self-report with information from other sources, including parent report, in-depth interviewing, behavioural observation by clinicians, and official criminal records. The sample consisted of N=33 juvenile delinquents with psychiatric disorders. The juvenile delinquents did not report increased levels of psychopathology or poor relationships with their parents, which is inconsistent with the fact that all juvenile delinquents were in day treatment for severe behavioural maladaptation and relationship problems. Moreover, parent ratings of psychopathology were consistently in the clinical range and relationship quality was evaluated as very poor by the parents (d>.80). We conclude that screening instruments for psychopathology and assessment of relationship quality relying on questionnaire self-report may not yield valid scores in this (extreme) population of juvenile delinquents. PMID:17161456

  4. Day-to-day measurement of patient-reported outcomes in exacerbations of chronic obstructive pulmonary disease

    PubMed Central

    Kocks, Jan Willem H; van den Berg, Jan Willem K; Kerstjens, Huib AM; Uil, Steven M; Vonk, Judith M; de Jong, Ynze P; Tsiligianni, Ioanna G; van der Molen, Thys

    2013-01-01

    Background Exacerbations of chronic obstructive pulmonary disease (COPD) are a major burden to patients and to society. Little is known about the possible role of day-to-day patient-reported outcomes during an exacerbation. This study aims to describe the day-to-day course of patient-reported health status during exacerbations of COPD and to assess its value in predicting clinical outcomes. Methods Data from two randomized controlled COPD exacerbation trials (n = 210 and n = 45 patients) were used to describe both the feasibility of daily collection of and the day-to-day course of patient-reported outcomes during outpatient treatment or admission to hospital. In addition to clinical parameters, the BORG dyspnea score, the Clinical COPD Questionnaire (CCQ), and the St George’s Respiratory Questionnaire were used in Cox regression models to predict treatment failure, time to next exacerbation, and mortality in the hospital study. Results All patient-reported outcomes showed a distinct pattern of improvement. In the multivariate models, absence of improvement in CCQ symptom score and impaired lung function were independent predictors of treatment failure. Health status and gender predicted time to next exacerbation. Five-year mortality was predicted by age, forced expiratory flow in one second % predicted, smoking status, and CCQ score. In outpatient management of exacerbations, health status was found to be less impaired than in hospitalized patients, while the rate and pattern of recovery was remarkably similar. Conclusion Daily health status measurements were found to predict treatment failure, which could help decision-making for patients hospitalized due to an exacerbation of COPD. PMID:23766644

  5. Patient-reported outcomes for US oncology labeling: review and discussion of score interpretation and analysis methods.

    PubMed

    Shields, Alan; Coon, Cheryl; Hao, Yanni; Krohe, Meaghan; Yaworsky, Andrew; Mazar, Iyar; Foley, Catherine; Globe, Denise

    2015-01-01

    This paper describes ways to approach the conceptual and practical challenges associated with interpreting the clinical meaning of scores produced by patient reported outcome (PRO) questionnaires, particularly when used to inform efficacy decisions for regulatory approval for oncology products. Score interpretation estimates are not inherent to PRO questionnaires per se, instead, vary dependent upon sample and study design characteristics. Scores from PRO measures can be interpreted at the individual and group level, and each carries its own set of statistics for evaluating differences. Oncology researchers have a variety of methods and data analytic strategies available to support their score interpretation needs, which should be considered in the context of their a priori knowledge of the target patient population, the hypothesized effects of treatment, the study design and assessment schedule, and the inferences and decisions to be made from the PRO data. PMID:26594897

  6. Patient-reported outcomes in stuttering treatment: conceptual framework.

    PubMed

    Franic, Duska M; Bothe, Anne K

    2008-04-01

    Evaluation of: Yaruss JS, Quesal RW. Overall Assessment of the Speaker's Experience of Stuttering (OASES): documenting multiple outcomes in stuttering treatment. J. Fluency Disord. 31(2), 90-115 (2006) [1] . These authors presented the first complete instrument intended to measure the impact of stuttering in adults who stutter (Overall Assessment of the Speaker's Experience of Stuttering; [OASES]). OASES is a 100-item self-report metric with four sections: general information, reactions to stuttering, communication in daily situations and quality of life. Its conceptual framework includes historic views of the influence of emotional and cognitive variables on stuttering; the WHO's International Classification of Impairments, Disabilities and Handicaps (ICIDH); and the WHO's International Classification of Functioning, Disability and Health (ICF). However, both this conceptual framework and the psychometric data presented to support the OASES are problematic in ways that clinicians and researchers in areas well-beyond stuttering may find informative as they consider their own applications. PMID:20528401

  7. Variation in the reporting of outcomes among pregnant women with epilepsy: a systematic review.

    PubMed

    Al Wattar, Bassel H; Placzek, Anna; Troko, Joy; Pirie, Alexander M; Khan, Khalid S; McCorry, Dougall; Zamora, Javier; Thangaratinam, Shakila

    2015-12-01

    Studies on pregnant women with epilepsy should evaluate both neurological and pregnancy outcomes. We undertook a systematic review of the literature of studies on pregnant women with epilepsy to collate the outcomes reported, and the quality of outcomes report in these studies. We searched major electronic databases (from 1999 until January 2015). Two independent reviewers selected studies and extracted data on study design, the risk of bias of the studies, journal impact factor and the quality of reported outcomes. We assessed the quality outcomes report using a six items standardised tool (score range 0-6). There were 70 different outcomes reported in 232 studies (maternal neurological (13/70, 19%), fetal and neonatal (28/70, 40%), and obstetric outcomes (29/70, 41%)). Most studies reported on major congenital fetal abnormalities (103/232, 44%), followed by live birth (60/232, 26%). Quality of the reported outcomes was poor (mean 1.54, SD 1.36). It was associated with journal impact factor (p=0.007), but not with study design (p=0.60), or risk of bias (p=0.17). The outcomes reported in studies on pregnant women with epilepsy varied widely, and the quality of the outcomes report was poor. There is a need to identify a set of core outcome to harmonise reporting in future clinical studies. PMID:26588438

  8. Overcoming barriers to implementing patient-reported outcomes in an electronic health record: a case report.

    PubMed

    Harle, Christopher A; Listhaus, Alyson; Covarrubias, Constanza M; Schmidt, Siegfried Of; Mackey, Sean; Carek, Peter J; Fillingim, Roger B; Hurley, Robert W

    2016-01-01

    In this case report, the authors describe the implementation of a system for collecting patient-reported outcomes and integrating results in an electronic health record. The objective was to identify lessons learned in overcoming barriers to collecting and integrating patient-reported outcomes in an electronic health record. The authors analyzed qualitative data in 42 documents collected from system development meetings, written feedback from users, and clinical observations with practice staff, providers, and patients. Guided by the Unified Theory on the Adoption and Use of Information Technology, 5 emergent themes were identified. Two barriers emerged: (i) uncertain clinical benefit and (ii) time, work flow, and effort constraints. Three facilitators emerged: (iii) process automation, (iv) usable system interfaces, and (v) collecting patient-reported outcomes for the right patient at the right time. For electronic health record-integrated patient-reported outcomes to succeed as useful clinical tools, system designers must ensure the clinical relevance of the information being collected while minimizing provider, staff, and patient burden. PMID:26159464

  9. Patient reported outcomes in head and neck cancer: selecting instruments for quality of life integration in clinical protocols

    PubMed Central

    2010-01-01

    Background Health Related Quality of Life has been used in medical research for more than twenty years, being progressively accepted during the last decade as an important patient reported outcome. Considering the multidimensional approach involved in Health Related Quality of Life assessment, instrument applicability and cultural adaptation must be tested for each population. In order to select the most appropriate instrument for Head and Neck cancer patients, two major Health Related Quality of Life specific questionnaires for Head and Neck cancer patients were compared. Conceptual differences, psychometric characteristics, scores, reliability, construct validity and sensitivity to symptomatology, tumour location, tumour size were analyzed. Methods 102 consecutive Head and Neck cancer patients completed two different Health Related Quality of Life questionnaires: EORTC QLQ-C30 and its specific head and neck module QLQ-H&N35 and the Functional Assessment of Cancer Therapy Scales (FACT-H&N). Patients completed the questionnaires, immediately before consultation as a part of the routine evaluation. Results A greater variability was always found in the EORTC QLC-C30 questionnaire's scores for all comparable domains. Both instruments revealed a good internal consistency and demonstrated to be good tools to distinguish symptomatic patients. The EORTC questionnaires still demonstrated sensitivity to distinguish T3 and T4 staging. Conceptual differences and the psychometric characteristics are discussed. Our results suggest that these two instruments assess different aspects of Health Related Quality of Life - the questionnaires should be used separately and chosen according to the study objectives and methodology. Conclusions This study emphases the importance in selecting the appropriate tool as a critical success factor in implementing routine Health Related Quality of Life assessment in clinical practice. This decision assumes particularly importance when utilization

  10. Tinnitus assessment by means of standardized self-report questionnaires: Psychometric properties of the Tinnitus Questionnaire (TQ), the Tinnitus Handicap Inventory (THI), and their short versions in an international and multi-lingual sample

    PubMed Central

    2012-01-01

    Background Tinnitus research in an international context requires standardized and validated questionnaires in different languages. The aim of the present set of analyses was the reassessment of basic psychometric properties according to classical test theory of self-report instruments that are being used within the multicentre Tinnitus Research Initiative (TRI) database project. Methods 1318 patients of the TRI Database were eligible for the analyses. The basic psychometric properties reliability, validity, and sensitivity of Tinnitus Handicap Inventory (THI), Tinnitus Questionnaire (TQ) and Tinnitus Beeinträchtigungs Fragebogen (i.e., Tinnitus Impairment Questionnaire, TBF-12) were assessed by the use of Cronbach’s alpha, corrected item-total correlations, correlation coefficients and standardized response means. Results Throughout the languages, all questionnaires showed high internal consistencies (Cronbach’s alpha > 0.79) and solid item-total correlations, as well as high correlations among themselves (around 0.8) and in combination with the self-reported tinnitus severity. However, some paradoxical correlations between individual items of the TBF-12, constructed as a shortform of the THI, and the corresponding THI-items were seen. Standardized Response Means (SRM) were low if tinnitus did not change, and between 0.3 and 1.09 for improved or worsened tinnitus complaints, indicating the sensitivity of the measures. Conclusions All investigated instruments have high internal consistency, high convergence and discriminant validity and good change sensitivity in an unselected large multinational clinical sample and thus appear appropriate to evaluate the effects of tinnitus treatments in a cross-cultural context. PMID:23078754

  11. Patient-reported outcomes of brentuximab vedotin in Hodgkin lymphoma and anaplastic large-cell lymphoma

    PubMed Central

    Chen, Robert; Allibone, Suzanne; Bartlett, Nancy L; Brice, Pauline; Chen, Andy; Pose, Katrina; Rich, Lynn; Bonthapally, Vijay; Garfin, Phillip M; Fanale, Michelle

    2016-01-01

    Background Patients with relapsed/refractory (R/R) Hodgkin lymphoma (HL) or R/R systemic anaplastic large-cell lymphoma (sALCL) treated with brentuximab vedotin (BV) experienced high remission rates in two Phase II trials. With increased response rates and survival times, patient-reported outcomes (PROs) and health-related quality of life (HRQoL) are becoming increasingly important and can help inform treatment decisions to enhance care of cancer patients. Objective The objective was to qualitatively assess HRQoL in long-term survivors treated with BV. Methods An eight-question survey assessing PRO-related aspects was developed and fielded to a subset of patients with HL or sALCL who remained in long-term follow-up after completing BV treatment in the two pivotal studies. Results The survey was completed by 25 of 38 patients (12 with HL, 13 with sALCL). The majority of patients reported that their energy level, outlook on life, difficulties with daily activities, ability to participate in physical activities, and overall HRQoL improved compared to those before BV treatment. Limitations Small sample size and lack of a baseline questionnaire or validated assessment instrument limit broad applicability of these findings to large populations of patients with HL or sALCL. Conclusion This is the first report of BV PRO data in R/R HL and sALCL. Given the patients’ poor prognostic outcomes before stem cell transplant, these encouraging results warrant formal evaluation of PRO end points in BV trials. PMID:27103829

  12. Physiotherapists use of and perspectives on the importance of patient-reported outcome measures for shoulder dysfunction

    PubMed Central

    Michener, Lori A

    2014-01-01

    Background Many patient-reported outcome measures (PROs) for shoulder dysfunctions have acceptable psychometric properties. The present study examined current PRO usage and perceived importance. Methods Delegates at the 2010 International Congress of Shoulder and Elbow Therapists were invited to participate in this cross-sectional observational study. Research Electronic Data Capture (REDCap) web-based tools were used to design an online questionnaire, which was e-mailed to participants. Results Participants (n = 101) reflected an 84% response rate. PRO use was considered ‘extremely’ or ‘very’ important by the majority of clinicians (76%) and researchers (98%). Most commonly used as a primary outcome by clinicians and researchers, respectively, were the Disabilities of the Arm Shoulder Hand Questionnaire (DASH) (40%, 44%) and the Oxford Shoulder Scale (OSS) (36%, 22%) and, as secondary outcomes, the DASH (33%, 28%), OSS (17%, 8%), the Shoulder Pain and Disability Index (SPADI) (8%,18%), and American Shoulder and Elbow Surgeons standardized assessment form (ASES) (8%, 13%). Psychometric properties were rated as ‘extremely’ or ‘very’ important by 86% to 96% of participants. Conclusions The majority of shoulder therapists consider PRO use to be very important and psychometric properties to be critical in PRO selection. The DASH, OSS, SPADI and ASES are most commonly used in clinical practice and research studies.

  13. Student Learning Outcomes Assessment Report. Board of Trustees Report BT95-3.

    ERIC Educational Resources Information Center

    Prince George's Community Coll., Largo, MD. Office of Institutional Research and Analysis.

    This student learning outcomes assessment report from Prince George's Community College (PGCC) in Maryland summarizes findings of several ongoing assessments. Part I provides an executive summary and reviews changes in academic regulations and standards adopted in 1993-94, including: (1) extending minimum standards for academic standing to include…

  14. The relationship between interviewer-respondent race match and reporting of energy intake using food frequency questionnaires in the rural South United States

    Technology Transfer Automated Retrieval System (TEKTRAN)

    The purpose of the observational study was to determine whether interviewer race influences food frequency questionnaire (FFQ) reporting accuracy in a Deep South, largely African American cohort. A secondary analysis was conducted to investigate the influence of interviewer race on energy reporting ...

  15. Assessment of Work Needs of Prospective Teachers-In-Training by an Analysis of the Minnesota Importance Questionnaire. Final Report.

    ERIC Educational Resources Information Center

    Gingrich, Douglas D.

    This study was designed to determine and compare the vocational needs of junior and senior male and female teacher education students at Stout State University. It investigated 21 hypotheses as measured by the Minnesota Importance Questionnaire using a sample of 94 students. The variables on the questionnaire were recast in the form of null…

  16. [Development and use of a questionnaire for evaluating teacher continuing education on the sex abuse topic].

    PubMed

    Bretz, E; Richter, N; Petermann, F; Waldmann, H C

    1997-01-01

    The authors constructed a questionnaire to evaluate a ten-day-training curriculum for educators concerning the topic of sexual abuse of children. This questionnaire measures learning outcomes as well as behavioral change at work. It consists of three parts: a knowledge test, an attitude questionnaire and a self-report questionnaire. The contents correspond to the training goals. As part of the evaluation study the questionnaire was completed by a sample of 129 educators. The inspection of item-difficulty and reliability yielded positive results-further amelioration can be achieved by minor changes. First analyses confirm the hypothesis that the self-report questionnaire is also a valid instrument for training evaluation. The questionnaire was highly accepted by the trainees, and the costs of evaluation were relatively low. Thus the questionnaire can be recommended as an evaluation instrument for trainings with similar goals and trainees. PMID:9312771

  17. Patient-reported outcome measures in arthroplasty registries

    PubMed Central

    Bohm, Eric; Franklin, Patricia; Lyman, Stephen; Denissen, Geke; Dawson, Jill; Dunn, Jennifer; Eresian Chenok, Kate; Dunbar, Michael; Overgaard, Søren; Garellick, Göran; Lübbeke, Anne

    2016-01-01

    Abstract — The International Society of Arthroplasty Registries (ISAR) Patient-Reported Outcome Measures (PROMs) Working Group have evaluated and recommended best practices in the selection, administration, and interpretation of PROMs for hip and knee arthroplasty registries. The 2 generic PROMs in common use are the Short Form health surveys (SF-36 or SF-12) and EuroQol 5-dimension (EQ-5D). The Working Group recommends that registries should choose specific PROMs that have been appropriately developed with good measurement properties for arthroplasty patients. The Working Group recommend the use of a 1-item pain question (“During the past 4 weeks, how would you describe the pain you usually have in your [right/left] [hip/knee]?”; response: none, very mild, mild, moderate, or severe) and a single-item satisfaction outcome (“How satisfied are you with your [right/left] [hip/knee] replacement?”; response: very unsatisfied, dissatisfied, neutral, satisfied, or very satisfied). Survey logistics include patient instructions, paper- and electronic-based data collection, reminders for follow-up, centralized as opposed to hospital-based follow-up, sample size, patient- or joint-specific evaluation, collection intervals, frequency of response, missing values, and factors in establishing a PROMs registry program. The Working Group recommends including age, sex, diagnosis at joint, general health status preoperatively, and joint pain and function score in case-mix adjustment models. Interpretation and statistical analysis should consider the absolute level of pain, function, and general health status as well as improvement, missing data, approaches to analysis and case-mix adjustment, minimal clinically important difference, and minimal detectable change. The Working Group recommends data collection immediately before and 1 year after surgery, a threshold of 60% for acceptable frequency of response, documentation of non-responders, and documentation of incomplete or

  18. Patient-reported outcomes of parenteral somatostatin analogue injections in 195 patients with acromegaly

    PubMed Central

    Strasburger, Christian J; Karavitaki, Niki; Störmann, Sylvère; Trainer, Peter J; Kreitschmann-Andermahr, Ilonka; Droste, Michael; Korbonits, Márta; Feldmann, Berit; Zopf, Kathrin; Sanderson, Violet Fazal; Schwicker, David; Gelbaum, Dana; Haviv, Asi; Bidlingmaier, Martin; Biermasz, Nienke R

    2016-01-01

    Background Long-acting somatostatin analogues delivered parenterally are the most widely used medical treatment in acromegaly. This patient-reported outcomes survey was designed to assess the impact of chronic injections on subjects with acromegaly. Methods The survey was conducted in nine pituitary centres in Germany, UK and The Netherlands. The questionnaire was developed by endocrinologists and covered aspects of acromegaly symptoms, injection-related manifestations, emotional and daily life impact, treatment satisfaction and unmet medical needs. Results In total, 195 patients participated, of which 112 (57%) were on octreotide (Sandostatin LAR) and 83 (43%) on lanreotide (Somatuline Depot). The majority (>70%) of patients reported acromegaly symptoms despite treatment. A total of 52% of patients reported that their symptoms worsen towards the end of the dosing interval. Administration site pain lasting up to a week following injection was the most frequently reported injection-related symptom (70% of patients). Other injection site reactions included nodules (38%), swelling (28%), bruising (16%), scar tissue (8%) and inflammation (7%). Injection burden was similar between octreotide and lanreotide. Only a minority of patients received injections at home (17%) and 5% were self-injecting. Over a third of patients indicated a feeling of loss of independence due to the injections, and 16% reported repeated work loss days. Despite the physical, emotional and daily life impact of injections, patients were satisfied with their treatment, yet reported that modifications that would offer major improvement over current care would be ‘avoiding injections’ and ‘better symptom control’. Conclusion Lifelong injections of long-acting somatostatin analogues have significant burden on the functioning, well-being and daily lives of patients with acromegaly. PMID:26744896

  19. Factor Structure of the Parent-Report Mood and Feelings Questionnaire (MFQ) in an Outpatient Mental Health Sample.

    PubMed

    Jeffreys, Megan; Rozenman, Michelle; Gonzalez, Araceli; Warnick, Erin M; Dauser, Christine; Scahill, Lawrence; Woolston, Joseph; Robin Weersing, V

    2016-08-01

    The current investigation examined the internal structure and discriminant validity of the parent-report Mood and Feelings Questionnaire (MFQ-P), a commonly used measure of depressive symptoms in youth. A total of 1493 families with youth ages 5 to 18 (61.02 % male) presenting for treatment at an outpatient mental health clinic were randomly allocated to an Exploratory Sample 1 or to a Replication Sample 2. Internal structure of the MFQ-P was examined using exploratory factor analysis in Sample 1 (N = 769) and then replicated using confirmatory factor analysis in Sample 2 (N = 724). Results of the exploratory factor analysis yielded a 5-factor structure comprised of core mood, vegetative, suicidality, cognitive, and agitated distress symptom subscales. The 5-factor solution was replicated in Sample 2 with adequate fit, (CFI = 0.908, TLI = 0.974, RMSEA =0.067). Results lend statistical support for 5 candidate subscales of the MFQ-P. These potential subscales may aid in efficient identification of critical symptoms of depression. PMID:26670323

  20. Motives for sports participation as predictions of self-reported outcomes after anterior cruciate ligament injury of the knee.

    PubMed

    Roessler, K K; Andersen, T E; Lohmander, S; Roos, E M

    2015-06-01

    Aim of the study was to access how individual's motives for participation in sports impact on self-reported outcomes 2 years after an anterior cruciate ligament injury. Based on a longitudinal cohort study, this secondary analysis present data from the Knee Anterior Cruciate Ligament, Nonsurgical versus Surgical Treatment (KANON) study, a randomized controlled trial. At baseline, 121 patients recorded in an initial questionnaire that their motives for sports participation fell into four categories: achievement, health, social integration, or fun and well-being. These four categories were used as variables in the analyses. All 121 subjects completed the 2-year follow-up. The largest improvement was seen in the Knee Injury and Osteoarthritis Outcome Score (KOOS) subscale sports and recreation function, with an effect size of 2.43. KOOS sports and recreation function was also the subscale score best predicted by the motives for sports participation. Baseline motives achievement and fun and well-being predicted worse levels of pain and function 2 years after the injury, even after adjusting for age, gender, treatment and baseline scores. Psychological aspects, such as motives for participation in sport, can be factors in predicting of patient-reported outcomes 2 years after injury. Evaluating motives for sports participation may help predict the outcome 2 years after ACL injury. PMID:24919411

  1. Composite Pain Index (CPI): Reliability, Validity, and Sensitivity of a Patient-Reported Outcome for Research

    PubMed Central

    Wilkie, Diana J.; Molokie, Robert E.; Suarez, Marie L.; Ezenwa, Miriam O.; Wang, Zaijie J.

    2015-01-01

    Objective A single score that represents the multidimensionality of pain would be an innovation for patient-reported outcomes. Our aim was to determine the reliability, validity, and sensitivity of the Composite Pain Index. Design Methodological analysis of data from a randomized controlled, pretest/posttest education-based intervention study. Setting The study was conducted in outpatient oncology clinics. Subjects The 176 subjects had pain, were 52 ± 12.5 years on average, 63% were female, and 46% had stage IV cancers. Methods We generated the Composite Pain Index from pain location, intensity, quality, and pattern scores measured with an electronic version of Melzack’s McGill Pain Questionnaire. Results The internal consistency values for the individual scores comprising the Composite Pain Index were adequate (.71 baseline, .69 posttest). Principal components analysis extracted one factor with an eigenvalue of 2.17 with explained variance of 54% at baseline and replicated the one factor with an eigenvalue of 2.11 at posttest. The factor loadings for location, intensity, quality, and pattern were .65, .71, .85, and .71 respectively (baseline) and .59, .81, .84, and .63 respectively (posttest). The Composite Pain Index was sensitive to an education intervention effect. Conclusions Findings support the Composite Pain Index as a score that integrates the multidimensional pain experience in people with cancer. It could be used as a patient-reported outcome measure to quantify the complexity of pain in clinical research and population studies of cancer pain and studied for relevance in other pain populations. PMID:25712169

  2. Patient-reported outcomes: instrument development and selection issues.

    PubMed

    Turner, Ralph R; Quittner, Alexandra L; Parasuraman, Bhash M; Kallich, Joel D; Cleeland, Charles S

    2007-01-01

    At its most elemental, patient-reported outcomes (PRO) assessment involves asking the patients questions and evaluating their answers. Instrument developers need to be clear about what they want to know, from whom they want to know it and why, whether what they learned is credible, and whether they can interpret what they learned in the context of the research objectives. Because credible instrument development is neither inexpensive nor technically trivial, researchers must first determine that no available measure meets their research objectives. We suggest that the tasks of either reviewing current instruments or developing new ones originate from the same basic premise: PRO assessment requires a well-articulated conceptual framework. Once defined in the context of the research objectives, the conceptual framework needs to be adapted to the population of interest. We discuss how qualitative methods enrich the conceptual framework and facilitate the technical measurement tasks of item development, testing, and reduction. We recognize that PRO assessment stands at a technological crossroads with the increasingly frequent application of "modern" psychometric methods and discuss how innovations such as item banks and computer-adaptive testing will influence PRO instrument development. Although items are the essential building blocks for instruments, scales are the primary unit of analysis for PRO assessment, and we discuss methods for scoring and combining them. Finally, PRO assessment is meaningless if the key figure chooses not to cooperate. We consider how respondent burden influences the quality of PRO assessment. PMID:17995478

  3. Assessing the Psychometric Properties of Kember and Leung's Reflection Questionnaire

    ERIC Educational Resources Information Center

    Lethbridge, Kristen; Andrusyszyn, Mary-Anne; Iwasiw, Carroll; Laschinger, Heather K. S.; Fernando, Rajulton

    2013-01-01

    Reflective thinking is often stated as a learning outcome of baccalaureate nursing education, and as a characteristic of a competent professional; however, no consistent method exists to assess the extent to which students engage in reflective thinking. To address this need, Kember and Leung developed and tested a self-report questionnaire based…

  4. Adverse Outcome Pathways: From Research to Regulation - Scientific Workshop Report

    EPA Science Inventory

    An adverse outcome pathway (AOP) organizes existing knowledge on chemical mode of action, starting with a molecular initiating event such as receptor binding, continuing through key events, and ending with an adverse outcome such as reproductive impairment. AOPs can help identify...

  5. The VVSymQ® instrument: Use of a new patient-reported outcome measure for assessment of varicose vein symptoms

    PubMed Central

    Turner-Bowker, Diane M; Elash, Celeste A; Wright, David

    2015-01-01

    Introduction No existing patient-reported outcome instrument focuses solely on assessment of varicose veins symptoms that are bothersome to patients. Methods The VVSymQ® instrument is a five-item patient-reported outcome that assesses symptoms most important to patients with varicose veins (heaviness, achiness, swelling, throbbing and itching). This paper describes how the VVSymQ® instrument was incorporated into an electronic daily diary to monitor key outcomes over time and capture treatment benefit in two randomized, controlled, phase 3 clinical trials. Results Patients were highly compliant in completing the electronic daily diary, and the VVSymQ® instrument demonstrated ability to detect overall change and ability to detect change that is meaningful to patients. Conclusion The VVSymQ® instrument is a reliable, valid instrument responsive to measuring change in the patient experience of varicose vein symptoms pre- and post-intervention, and is uniquely focused on patient-reported symptoms compared with other widely used questionnaires completed by clinicians. PMID:26183669

  6. The Strengths and Difficulties Questionnaire as a Predictor of Parent-Reported Diagnosis of Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder

    PubMed Central

    Russell, Ginny; Rodgers, Lauren R.; Ford, Tamsin

    2013-01-01

    The Strengths and Difficulties Questionnaire (SDQ) is widely used as an international standardised instrument measuring child behaviour. The primary aim of our study was to examine whether behavioral symptoms measured by SDQ were elevated among children with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) relative to the rest of the population, and to examine the predictive value of the SDQ for outcome of parent-reported clinical diagnosis of ASD/ADHD. A secondary aim was to examine the extent of overlap in symptoms between children diagnosed with these two disorders, as measured by the SDQ subscales. A cross-sectional secondary analysis of data from the Millennium Birth Cohort (n = 19,519), was conducted. Data were weighted to be representative of the UK population as a whole. ADHD or ASD identified by a medical doctor or health professional were reported by parents in 2008 and this was the case definition of diagnosis; (ADHD n = 173, ASD n = 209, excluding twins and triplets). Study children's ages ranged from 6.3–8.2 years; (mean 7.2 years). Logistic regression was used to examine the association between the parent-reported clinical diagnosis of ASD/ADHD and teacher and parent-reported SDQ subscales. All SDQ subscales were strongly associated with both ASD and ADHD. There was substantial co-occurrence of behavioral difficulties between children diagnosed with ASD and those diagnosed with ADHD. After adjustment for other subscales, the final model for ADHD, contained hyperactivity/inattention and impact symptoms only and had a sensitivity of 91% and specificity of 90%; (AUC) = 0.94 (95% CI, 0.90–0.97). The final model for ASD was composed of all subscales except the ‘peer problems’ scales, indicating of the complexity of behavioural difficulties that may accompany ASD. A threshold of 0.03 produced model sensitivity and specificity of 79% and 93% respectively; AUC = 0.90 (95% CI, 0.86–0.95). The

  7. Validating English- and Spanish-language patient-reported outcome measures in underserved patients with rheumatic disease

    PubMed Central

    2011-01-01

    Introduction Rheumatic diseases are among the most common and debilitating health problems in the United States. These diseases are chronic, can result in severe decrements of physical and psychosocial functioning and affect patients' overall quality of life. A consensus regarding the best patient outcomes to be measured in randomized, controlled trials and prospective natural history studies is essential to provide best estimates of efficacy and safety of interventions across diverse patient populations. Methods Face-to-face English- and Spanish-language cognitive interviews were conducted among urban Hispanic and African American patients with rheumatic disease to develop a questionnaire booklet. Six measures validating patient-reported outcomes were included: the Arthritis Self-Efficacy Scale, the Stanford Health Assessment Questionnaire Disability Index, the Wong-Baker Faces Pain Scale, the Short Acculturation Scale, the Center for Epidemiologic Studies Depression Scale and the Inventory of Complementary and Alternative Medicine Practices. A sample of patients (n = 15) attending the National Institute of Arthritis and Musculoskeletal and Skin Diseases Community Health Center participated in the initial interviews. Revised measures were further tested for reliability in a separate sample of patients (n = 109) upon enrollment at the health center. Results Cognitive interviews provided feedback for questionnaire modifications and methods to enhance content validity and data quality, including discarding redundant questions, providing visual aids and concrete examples when appropriate and increasing the use of racially and ethnically concordant interviewers. The cognitive interviews further elucidated that some contextual assumptions and language usage in the original questionnaires may not have taken each respondent's environmental and sociocultural context into consideration. Internal reliability for previously tested measures remained high (Cronbach's α = 0

  8. Swedish Version of Mood Spectrum Self-Report Questionnaire: Psychometric Properties of Lifetime and Last-week Version

    PubMed Central

    Ioannou, Michael; Dellepiane, Marzia; Benvenuti, Antonella; Feloukatzis, Konstantinos; Skondra, Nektaria; Dell'Osso, Liliana; Steingrímsson, Steinn

    2016-01-01

    Background: Mood Spectrum Self Report (MOODS-SR) is an instrument that assesses mood spectrum symptomatology including subthreshold manifestations and temperamental features. There are different versions of the MOODS-SR for different time frames of symptom assessment: lifetime (MOODS-LT), last-month and last-week (MOODS-LW) versions. Objective: To evaluate the psychometric properties of the MOODS-LT the MOODS-LW. Methods: The reliability of the MOODS-LT and MOODS-LW was evaluated in terms of internal consistency and partial correlations among domains and subdomains. The known-group validity was tested by comparing out-patients with bipolar disorder (n=27), unipolar depression (n=8) healthy controls (n=68). The convergent and divergent validity of MOODS-LW were evaluated using the Montgomery Åsberg Depression Rating Scale (MADRS), the Young-Ziegler Mania Rating Scale (YMRS) in outpatients as well the General Health Questionnaire (GHQ-12) in healthy controls. Results: Both MOODS-LT and MOOODS-LW showed high internal consistency with the Kuder-Richardson coefficient ranging from 0.823 to 0.985 as well as consistent correlations for all domains and subdomains. The last-week version correlated significantly with MADRS (r= 0.79) and YMRS (r=0.46) in outpatients and with GHQ-12 (r= 0.50 for depression domain, r= 0.29 for rhythmicity) in healthy controls. Conclusion: The Swedish version of the MOODS-LT showed similar psychometric properties to other translated versions. Regarding MOODS-LW, this first published psychometric evaluation of the scale showed promising psychometric properties including good correlation to established symptom assessment scales. In healthy controls, the depression and rhythmicity domain scores of the last-week version correlated significantly with the occurrence of mild psychological distress. PMID:27346997

  9. Self-Reported Cognitive Outcomes in Patients With Brain Metastases Before and After Radiation Therapy

    SciTech Connect

    Cole, Ansa Maer; Scherwath, Angela; Ernst, Gundula; Lanfermann, Heinrich; Bremer, Michael; Steinmann, Diana

    2013-11-15

    Purpose: Patients with brain metastases may experience treatment-related cognitive deficits. In this study, we prospectively assessed the self-reported cognitive abilities of patients with brain metastases from any solid primary cancer before and after irradiation of the brain. Methods and Materials: The treatment group (TG) consisted of adult patients (n=50) with brain metastases who received whole or partial irradiation of the brain without having received prior radiation therapy (RT). The control group (CG) consisted of breast cancer patients (n=27) without cranial involvement who were treated with adjuvant RT. Patients were recruited between May 2008 and December 2010. Self-reported cognitive abilities were acquired before RT and 6 weeks, 3 months, and 6 months after irradiation. The information regarding the neurocognitive status was collected by use of the German questionnaires for self-perceived deficits in attention (FEDA) and subjectively experienced everyday memory performance (FEAG). Results: The baseline data showed a high proportion of self-perceived neurocognitive deficits in both groups. A comparison between the TG and the CG regarding the course of self-reported outcomes after RT showed significant between-group differences for the FEDA scales 2 and 3: fatigue and retardation of daily living activities (P=.002) and decrease in motivation (P=.032) with an increase of attention deficits in the TG, but not in the CG. There was a trend towards significance in FEDA scale 1: distractibility and retardation of mental processes (P=.059) between the TG and the CG. The FEAG assessment presented no significant differences. An additional subgroup analysis within the TG was carried out. FEDA scale 3 showed significant differences in the time-related progress between patients with whole-brain RT and those receiving hypofractionated stereotactic RT (P=.025), with less decrease in motivation in the latter group. Conclusion: Self-reported attention declined in

  10. The Design and Validation of a Parent-Report Questionnaire for Assessing the Characteristics and Quality of Early Intervention over Time

    ERIC Educational Resources Information Center

    Young, Alys; Gascon-Ramos, Maria; Campbell, Malcolm; Bamford, John

    2009-01-01

    This article concerns a parent-report repeat questionnaire to evaluate the quality of multiprofessional early intervention following early identification of deafness. It discusses the rationale for the design of the instrument, its theoretical underpinnings, its psychometric properties, and its usability. Results for the validity and reliability…

  11. Self-Report Data in Cross-Cultural Research: Issues of Construct Validity in Questionnaires for Quantitative Research in Educational Leadership

    ERIC Educational Resources Information Center

    Thomas, Andrew

    2007-01-01

    This paper examines issues arising from the use of self-report questionnaires in cross-cultural contexts. The research draws from the extensive literature on cross-cultural leadership in business organizational culture as well as from educational cross-cultural contexts. It examines claims, drawn from business and educational contexts, that many…

  12. Selective reporting bias of harm outcomes within studies: findings from a cohort of systematic reviews

    PubMed Central

    Saini, Pooja; Loke, Yoon K; Gamble, Carrol; Altman, Douglas G; Williamson, Paula R

    2014-01-01

    Objective To determine the extent and nature of selective non-reporting of harm outcomes in clinical studies that were eligible for inclusion in a cohort of systematic reviews. Design Cohort study of systematic reviews from two databases. Setting Outcome reporting bias in trials for harm outcomes (ORBIT II) in systematic reviews from the Cochrane Library and a separate cohort of systematic reviews of adverse events. Participants 92 systematic reviews of randomised controlled trials and non-randomised studies published in the Cochrane Library between issue 9, 2012 and issue 2, 2013 (Cochrane cohort) and 230 systematic reviews published between 1 January 2007 and 31 December 2011 in other publications, synthesising data on harm outcomes (adverse event cohort). Methods A 13 point classification system for missing outcome data on harm was developed and applied to the studies. Results 86% (79/92) of reviews in the Cochrane cohort did not include full data from the main harm outcome of interest of each review for all of the eligible studies included within that review; 76% (173/230) for the adverse event cohort. Overall, the single primary harm outcome was inadequately reported in 76% (705/931) of the studies included in the 92 reviews from the Cochrane cohort and not reported in 47% (4159/8837) of the 230 reviews in the adverse event cohort. In a sample of primary studies not reporting on the single primary harm outcome in the review, scrutiny of the study publication revealed that outcome reporting bias was suspected in nearly two thirds (63%, 248/393). Conclusions The number of reviews suspected of outcome reporting bias as a result of missing or partially reported harm related outcomes from at least one eligible study is high. The declaration of important harms and the quality of the reporting of harm outcomes must be improved in both primary studies and systematic reviews. PMID:25416499

  13. Australian Enterococcal Sepsis Outcome Programme annual report, 2013.

    PubMed

    Coombs, Geoffrey W; Pearson, Julie C; Daly, Denise A; Le, Tam T; Robinson, James O; Gottlieb, Thomas; Howden, Benjamin P; Johnson, Paul D R; Bennett, Catherine M; Stinear, Timothy P; Turnidge, John D

    2014-12-01

    From 1 January to 31 December 2013, 26 institutions around Australia participated in the Australian Enterococcal Sepsis Outcome Programme (AESOP). The aim of AESOP 2013 was to determine the proportion of enterococcal bacteraemia isolates in Australia that are antimicrobial resistant, and to characterise the molecular epidemiology of the Enterococcus faecium isolates. Of the 826 unique episodes of bacteraemia investigated, 94.6% were caused by either E. faecalis (56.1%) or E. faecium (38.5%). Ampicillin resistance was not detected in E. faecalis but was detected in over 90% of E. faecium. Vancomycin non-susceptibility was reported in 0.2% and 40.9% of E. faecalis and E. faecium respectively and was predominately due to the acquisition of the vanB operon. Overall, 41.6% of E. faecium harboured vanA or vanB genes. The percentage of E. faecium bacteraemia isolates resistant to vancomycin in Australia is significantly higher than that seen in most European countries. E. faecium isolates consisted of 81 pulsed-field gel electrophoresis pulsotypes of which 72.3% were classified into 14 major pulsotypes containing five or more isolates. Multilocus sequence typing grouped the 14 major pulsotypes into clonal cluster 17, a major hospital-adapted polyclonal E. faecium cluster. Of the 2 predominant sequence types, ST203 (80 isolates) was identified across Australia and ST555 (40 isolates) was isolated primarily in the western and central regions (Northern Territory, South Australia and Western Australia) respectively. In conclusion, the AESOP 2013 has shown enterococcal bacteraemias in Australia are frequently caused by polyclonal ampicillin-resistant high-level gentamicin resistant vanB E. faecium, which have limited treatment options. PMID:25631594

  14. Clinical Outcome Assessments: Conceptual Foundation-Report of the ISPOR Clinical Outcomes Assessment - Emerging Good Practices for Outcomes Research Task Force.

    PubMed

    Walton, Marc K; Powers, John H; Hobart, Jeremy; Patrick, Donald; Marquis, Patrick; Vamvakas, Spiros; Isaac, Maria; Molsen, Elizabeth; Cano, Stefan; Burke, Laurie B

    2015-09-01

    An outcome assessment, the patient assessment used in an endpoint, is the measuring instrument that provides a rating or score (categorical or continuous) that is intended to represent some aspect of the patient's health status. Outcome assessments are used to define efficacy endpoints when developing a therapy for a disease or condition. Most efficacy endpoints are based on specified clinical assessments of patients. When clinical assessments are used as clinical trial outcomes, they are called clinical outcome assessments (COAs). COAs include any assessment that may be influenced by human choices, judgment, or motivation. COAs must be well-defined and possess adequate measurement properties to demonstrate (directly or indirectly) the benefits of a treatment. In contrast, a biomarker assessment is one that is subject to little, if any, patient motivational or rater judgmental influence. This is the first of two reports by the ISPOR Clinical Outcomes Assessment - Emerging Good Practices for Outcomes Research Task Force. This report provides foundational definitions important for an understanding of COA measurement principles. The foundation provided in this report includes what it means to demonstrate a beneficial effect, how assessments of patients relate to the objective of showing a treatment's benefit, and how these assessments are used in clinical trial endpoints. In addition, this report describes intrinsic attributes of patient assessments and clinical trial factors that can affect the properties of the measurements. These factors should be considered when developing or refining assessments. These considerations will aid investigators designing trials in their choice of using an existing assessment or developing a new outcome assessment. Although the focus of this report is on the development of a new COA to define endpoints in a clinical trial, these principles may be applied more generally. A critical element in appraising or developing a COA is to

  15. An Introduction to Item Response Theory for Patient-Reported Outcome Measurement

    PubMed Central

    Nguyen, Tam H.; Han, Hae-Ra; Kim, Miyong T.

    2015-01-01

    The growing emphasis on patient-centered care has accelerated the demand for high-quality data from patient-reported outcome (PRO) measures. Traditionally, the development and validation of these measures has been guided by classical test theory. However, item response theory (IRT), an alternate measurement framework, offers promise for addressing practical measurement problems found in health-related research that have been difficult to solve through classical methods. This paper introduces foundational concepts in IRT, as well as commonly used models and their assumptions. Existing data on a combined sample (n = 636) of Korean American and Vietnamese American adults who responded to the High Blood Pressure Health Literacy Scale and the Patient Health Questionnaire-9 are used to exemplify typical applications of IRT. These examples illustrate how IRT can be used to improve the development, refinement, and evaluation of PRO measures. Greater use of methods based on this framework can increase the accuracy and efficiency with which PROs are measured. PMID:24403095

  16. An introduction to item response theory for patient-reported outcome measurement.

    PubMed

    Nguyen, Tam H; Han, Hae-Ra; Kim, Miyong T; Chan, Kitty S

    2014-01-01

    The growing emphasis on patient-centered care has accelerated the demand for high-quality data from patient-reported outcome (PRO) measures. Traditionally, the development and validation of these measures has been guided by classical test theory. However, item response theory (IRT), an alternate measurement framework, offers promise for addressing practical measurement problems found in health-related research that have been difficult to solve through classical methods. This paper introduces foundational concepts in IRT, as well as commonly used models and their assumptions. Existing data on a combined sample (n = 636) of Korean American and Vietnamese American adults who responded to the High Blood Pressure Health Literacy Scale and the Patient Health Questionnaire-9 are used to exemplify typical applications of IRT. These examples illustrate how IRT can be used to improve the development, refinement, and evaluation of PRO measures. Greater use of methods based on this framework can increase the accuracy and efficiency with which PROs are measured. PMID:24403095

  17. Systematic Review of Outcome Measures Reported in Clinical Canine Osteoarthritis Research

    PubMed Central

    Asher, Lucy; Dean, Rachel S.

    2016-01-01

    Objective To record and categorize the outcome measures used in dogs with naturally occurring osteoarthritis (OA) by systematically reviewing the peer reviewed publications on OA in dogs. Study Design Systematic literature review. Study Population Peer reviewed literature on canine OA. Methods A computer‐based bibliographic search was performed on PubMed and CAB Abstracts in August 2013 to find peer reviewed publications relevant to canine OA. Inclusion and exclusion criteria were applied. The outcome measures reported within each publication were recorded and categorized for comparison. Adequately described outcome measures were assessed for uniqueness and evidence of prior validation. Results Of 3,697 publications identified and screened, 117 were deemed eligible for inclusion. Within eligible publications, outcome measures were used 618 times (median of 4 outcome measures per publication). Outcomes measured were divided into 5 groups containing 65 categories. The most frequently assessed outcomes were lameness assessment with no stated gait/mixed gaits (66 outcomes), radiography (58), and lameness single gait/lateral motion (55). Of 618 outcome measures reported, 491 were assessed for uniqueness and 348 (71%) were unique to a single publication. Ten outcome measures were reported to have been validated. Conclusion Many outcome measures have been used to assess canine OA. There is no consensus on which are the most useful outcomes or by which method they should be assessed. There is a pressing need for agreement on outcomes reporting in canine OA and for validation of outcome measures used for these assessments. Until consensus is reached, we recommend at least one validated outcome measure be used in every clinical study. PMID:27120270

  18. Quality Assurance and Learning Outcomes. ENQA Workshop Report 17

    ERIC Educational Resources Information Center

    Adamson, Lena; Becerro, Maria; Cullen, Peter; Gonzalez-Vega, Laureano; Sobrino, Juan Jose; Ryan, Norma

    2010-01-01

    Learning outcomes are described as written statements of what a learner is expected to know, understand and/or be able to do at the end of a period of learning. At the beginning of the 90s, a EU pilot project on ECTS showed that study programmes were much easier to compare if they were described in terms of outcomes, instead of inputs. The…

  19. Donor organ distribution according to urgency of need or outcome maximization in liver transplantation. A questionnaire survey among patients and medical staff.

    PubMed

    Umgelter, Katrin S; Tobiasch, Moritz; Anetsberger, Aida; Blobner, Manfred; Thorban, Stefan; Umgelter, Andreas

    2015-04-01

    Low donor rates in Germany cause a trade-off between equity in the distribution of chances for survival and efficiency in dead-donor liver transplantation. Public attitudes concerning the principles that should govern organ allocation are of interest. We performed a questionnaire-based study among patients and medical staff. 1826 of 2200 questionnaires were returned. 79.2%, 67.1%, and 24.4% patients wanted to accept liver transplantation for themselves if expected 1-year survival was 80%, 50%, and 20%, respectively. 57.7% affirmed 'averting immediate risk of death (urgency) is a more important criterion for organ allocation than expected long-term success' (P = 0.002 against indifference). The majority of medical staff took the opposite decision. 20.7%, 8.8%, and 21.2% of patients chose 50%, 33%, and 10% as lowest acceptable 5-year survival, respectively. 49.3% accepted a survival of <10%. Variables associated with preferring urgency over efficiency as criterion for allocation were age (OR 1.009; 95% CI: 1.000-1.017; female gender (OR 1.331; 95%CI 0.992-1.784); higher education (OR 0.881; 95%CI 0.801-0.969); and refusal of transplantation for oneself (OR 1.719; 95%CI 1.272-2.324). Most patients supported urgency-based liver allocation. Patients and medical staff would accept lower survival rates than the transplant community. PMID:25557453

  20. Measuring health-related quality of life in high-grade glioma patients at the end of life using a proxy-reported retrospective questionnaire.

    PubMed

    Sizoo, Eefje M; Dirven, Linda; Reijneveld, Jaap C; Postma, Tjeerd J; Heimans, Jan J; Deliens, Luc; Pasman, H Roeline W; Taphoorn, Martin J B

    2014-01-01

    To develop, validate, and report on the use of a retrospective proxy-reported questionnaire measuring health-related quality of life (HRQoL) in the end-of-life (EOL) phase of high-grade glioma (HGG) patients. Items relevant for the defined construct were selected using existing questionnaires, topics identified as important in literature, and expert opinion (experienced neuro-oncologists and EOL experts). Psychometric properties, content validity and internal consistency, were determined and the questionnaire was subsequently adapted. Proxy-reported HRQoL data of HGG patients in the EOL, including changes over time, were analyzed. Twenty-nine items were selected covering seven domains; physical comfort, physical and cognitive functioning, psychological, social and spiritual well-being, and overall quality of life. Relatives of 83 deceased HGG patients completed the questionnaire. Content validity was assessed to be adequate. Internal consistency in the domains varied from reasonable to good. Two items were excluded due to poor psychometric properties. Symptom burden increased (p < 0.01), except for nausea (p = 0.058), as death approached. Cognitive, physical and psychological functioning deteriorated over time (all p < 0.01). Acceptance of disease seemed to increase slightly towards death, but this was not significant (p = 0.058). Participating in social activities and family life was rated as poor (≤ 50), whereas received support from their social environment and dying with dignity were rated as good (>50). Overall quality of life was rated as poor, mean (SD) of 29 (26). Measuring HRQoL at the EOL of HGG patients with a retrospective, proxy-reported questionnaire was feasible, yielding a validated instrument. HRQoL was reported as poor and deteriorated as death approached. PMID:24162875

  1. Measurement properties of patient-reported outcome measures (PROMs) in adults with obstructive sleep apnea (OSA): A systematic review.

    PubMed

    Abma, Inger L; van der Wees, Philip J; Veer, Vik; Westert, Gert P; Rovers, Maroeska

    2016-08-01

    This systematic review summarizes the evidence regarding the quality of patient-reported outcome measures (PROMs) validated in patients with obstructive sleep apnea (OSA). We performed a systematic literature search of all PROMs validated in patients with OSA, and found 22 measures meeting our inclusion criteria. The quality of the studies was assessed using the consensus-based standards for the selection of health status measurement instruments (COSMIN) checklist. The results showed that most of the measurement properties of the PROMs were not, or not adequately, assessed. For many identified PROMs there was no involvement of patients with OSA during their development or before the PROM was tested in patients with OSA. Positive exceptions and the best current candidates for assessing health status in patients with OSA are the sleep apnea quality of life index (SAQLI), Maugeri obstructive sleep apnea syndrome (MOSAS) questionnaire, Quebec sleep questionnaire (QSQ) and the obstructive sleep apnea patient-oriented severity index (OSAPOSI). Even though there is not enough evidence to fully judge the quality of these PROMs as outcome measure, when interpreted with caution, they have the potential to add value to clinical research and clinical practice in evaluating aspects of health status that are important to patients. PMID:26433776

  2. A review of the most common patient-reported outcomes in COPD--revisiting current knowledge and estimating future challenges.

    PubMed

    Cazzola, Mario; Hanania, Nicola Alexander; MacNee, William; Rüdell, Katja; Hackford, Claire; Tamimi, Nihad

    2015-01-01

    Patient-reported outcome (PRO) measures that quantify disease impact have become important measures of outcome in COPD research and treatment. The objective of this literature review was to comprehensively evaluate psychometric properties of available PRO instruments and the ability of each of them to characterize pharmaceutical treatment effects from published clinical trial evidence. Identified in this study were several PRO measures, both those that have been used extensively in COPD clinical trials (St George's Respiratory Questionnaire and Chronic Respiratory Questionnaire) and new instruments whose full value is still to be determined. This suggests a great need for more information about the patient experience of treatment benefit, but this also may pose challenges to researchers, clinicians, and other important stakeholders (eg, regulatory agencies, pharmaceutical companies) who develop new treatment entities and payers (including but not limited to health technology assessment agencies such as the National Institute for Health and Care Excellence and the Canadian Agency for Drugs and Technologies in Health). The purpose of this review is to enable researchers and clinicians to gain a broad overview of PRO measures in COPD by summarizing the value and purpose of these measures and by providing sufficient detail for interested audiences to determine which instrument may be the most suitable for evaluating a particular research purpose. PMID:25897216

  3. Patient-reported outcomes and the evolution of adverse event reporting in oncology.

    PubMed

    Trotti, Andy; Colevas, A Dimitrios; Setser, Ann; Basch, Ethan

    2007-11-10

    Adverse event (AE) reporting in oncology has evolved from informal descriptions to a highly systematized process. The Common Terminology Criteria for Adverse Events (CTCAE) is the predominant system for describing the severity of AEs commonly encountered in oncology clinical trials. CTCAE clinical descriptors have been developed empirically during more than 30 years of use. The method of data collection is clinician based. Limitations of the CTC system include potential for incomplete reporting and limited guidance on data analysis and presentation methods. The Medical Dictionary for Regulatory Activities (MedDRA) is a comprehensive medical terminology system used for regulatory reporting and drug labeling. MedDRA does not provide for severity ranking of AEs. CTC-based data presentations are the primary method of AE data reporting used in scientific journals and oncology meetings. Patient-reported outcome instruments (PROs) cover the subjective domain of AEs. Exploratory work suggests PROs can be used with a high degree of patient engagement and compliance. Additional studies are needed to determine how PROs can be used to complement current AE reporting systems. Potential models for integrating PROs into AE reporting are described in this review. AE reporting methods will continue to evolve in response to changing therapies and growing interest in measuring the impact of cancer treatment on health status. Although integration of PROs into AE reporting may ultimately improve the comprehensiveness and quality of collected data, it may also increase the administrative burden and cost of conducting trials. Therefore, care must be used when developing health outcomes and safety data collection plans. PMID:17991931

  4. Improving energy audit process and report outcomes through planning initiatives

    NASA Astrophysics Data System (ADS)

    Sprau Coulter, Tabitha L.

    Energy audits and energy models are an important aspect of the retrofit design process, as they provide project teams with an opportunity to evaluate a facilities current building systems' and energy performance. The information collected during an energy audit is typically used to develop an energy model and an energy audit report that are both used to assist in making decisions about the design and implementation of energy conservation measures in a facility. The current lack of energy auditing standards results in a high degree of variability in energy audit outcomes depending on the individual performing the audit. The research presented is based on the conviction that performing an energy audit and producing a value adding energy model for retrofit buildings can benefit from a revised approach. The research was divided into four phases, with the initial three phases consisting of: 1.) process mapping activity - aimed at reducing variability in the energy auditing and energy modeling process. 2.) survey analysis -- To examine the misalignment between how industry members use the top energy modeling tools compared to their intended use as defined by software representatives. 3.) sensitivity analysis -- analysis of the affect key energy modeling inputs are having on energy modeling analysis results. The initial three phases helped define the need for an improved energy audit approach that better aligns data collection with facility owners' needs and priorities. The initial three phases also assisted in the development of a multi-criteria decision support tool that incorporates a House of Quality approach to guide a pre-audit planning activity. For the fourth and final research phase explored the impacts and evaluation methods of a pre-audit planning activity using two comparative energy audits as case studies. In each case, an energy audit professionals was asked to complete an audit using their traditional methods along with an audit which involved them first

  5. [The Somatic Symptoms Experiences Questionnaire (SSEQ): a new self-report instrument for the assessment of psychological characteristics of patients with somatoform disorder].

    PubMed

    Herzog, Annabel; Voigt, Katharina; Meyer, Björn; Rief, Winfried; Henningsen, Peter; Hausteiner-Wiehle, Constanze; Löwe, Bernd

    2014-03-01

    Psychological symptoms of somatoform disorders will be part of their new definition in DSM-5. We developed the Somatic Symptoms Experiences Questionnaire (SSEQ) as a self-report questionnaire to assess important psychological characteristics of patients with somatoform disorders. Item selection and identification of factor structure, as well as reliability and validity have been checked in a sample of N=453 psychsomatic outpatients. Results of a principal components analysis with Promax-rotation suggested 4 factors (health worries, illness experience, difficulties in interaction with doctors, impact of illness). Validity analyses confirmed associations between the SSEQ-Scores and the physical disability of patients. Although further assessments of psychometric qualities are needed, the questionnaire appears to be well-suited for future assessment of relevant psychological features of somatoform disorders. PMID:23864304

  6. Guillain-Barré Syndrome with Fatal Outcome during HIV-1-Seroconversion: A Case Report

    PubMed Central

    Pontali, Emanuele; Feasi, Marcello; Crisalli, Maria Paola; Cassola, Giovanni

    2011-01-01

    Guillain-Barré syndrome (GBS) is an acute or subacute peripheral polyneuropathy characterized by symmetrical muscle weakness. Its occurrence has been reported during acute HIV seroconversion since 1985. Among HIV-infected subjects, GBS has generally a favourable outcome. We report a case of GBS with fatal outcome during HIV seroconversion. PMID:22567484

  7. Measuring and Predicting Patient Dissatisfaction after Anterior Urethroplasty Using Patient Reported Outcomes Measures

    PubMed Central

    Bertrand, Laura A.; Voelzke, Bryan B.; Elliott, Sean P.; Myers, Jeremy B.; Breyer, Benjamin N.; Vanni, Alex J.; McClung, Christopher D.; Tam, Christopher A.; Warren, Gareth J.; Erickson, Bradley A.

    2016-01-01

    Purpose Subjective measures of success after urethroplasty have become increasingly valuable in postoperative monitoring. We examined patient reported satisfaction following anterior urethroplasty using objective measures as a proxy for success. Materials and Methods Men 18 years old or older with urethral strictures undergoing urethroplasty were prospectively enrolled in a longitudinal, multi-institutional urethroplasty outcomes database. Preoperative and postoperative assessment included questionnaires to assess lower urinary tract symptoms, pain, satisfaction and sexual health. Analyses controlling for stricture recurrence (defined as the inability to traverse the reconstructed urethra with a flexible cystoscope) were performed to determine independent predictors of dissatisfaction. Results At a mean followup of 14 months we found a high 89.4% rate of overall postoperative satisfaction in 433 patients and a high 82.8% rate in those who would have chosen the operation again. Men with cystoscopic recurrence were more likely to report dissatisfaction (OR 4.96, 95% CI 2.07–11.90) and men reporting dissatisfaction had significantly worse uroflowmetry measures (each p <0.02). When controlling for recurrence, multivariate analysis revealed that urethra and bladder pain (OR 1.71, 95% CI 1.05–2.77 and OR 2.74, 95% CI 1.12–6.69, respectively), a postoperative decrease in sexual activity (OR 4.36, 95% CI 2.07–11.90) and persistent lower urinary tract symptoms (eg straining to urinate OR 3.23, 1.74-6.01) were independent predictors of dissatisfaction. Conclusions Overall satisfaction after anterior urethroplasty is high and traditional measures of surgical success strongly correlate with satisfaction. However, independently of the anatomical appearance of the reconstructed urethra, postoperative pain, sexual dysfunction and persistent lower urinary tract symptoms were predictors of patient dissatisfaction. PMID:26907509

  8. Patient Reported Outcomes for Rotator Cuff Disease - Which PRO Should You Use?

    PubMed Central

    Makhni, Eric Chugh; Hamamoto, Jason Taizo; Higgins, John; Patterson, Taylor; Romeo, Anthony A.; Verma, Nikhil N.

    2016-01-01

    Objectives: Patient reported outcomes (PRO) are important clinical and research tools that are utilized by orthopedic surgeons in order to assess health outcomes following treatment. This is particularly so in the setting of rotator cuff pathology, in which several different validated patient reported outcomes exist. However, multiple recent studies have demonstrated a lack of standardization in the utilization of these scores. Moreover, many of these scores contain numerous components, thereby making them difficult to administer in a busy ambulatory setting. The goal of this study was to quantitatively assess the commonly used PRO for rotator cuff disease in order to identify the most efficient and comprehensive ones available for clinicians. Methods: Fifteen different PROs commonly used for rotator cuff pathology were selected for review. These outcome tools were assessed by the study team and reviewed for comprehensiveness with regards to assessment of pain, strength, activity, motion, and quality of life. The comprehensiveness and efficiency of each tool was evaluated by inclusion of questions addressing each domain. PROs were also evaluated with a focus of pain criteria (night pain, baseline/general pain, pain during activities of daily living, pain during sport, and pain during work). Finally, all PROs were assessed with regards to comprehensiveness in assessing activity scores (motion/stiffness, activities of daily living, sport, and work). Comprehensiveness scores were calculated by dividing the number of domains or subdomains present by the total domains or subdomains possible. Efficiency was calculated by dividing the number of domains present by the number of questions contained in each PRO. Results: The UCLA, Western Ontario Rotator Cuff Index (WORC), Disabilities of the Arm, Shoulder, and Hand (DASH), PENN, Shoulder Rating Questionnaire (SRQ), and Korean Shoulder Score (KSS) had an overall comprehensiveness score of 1.00 indicating all domains were

  9. Validation of Self-Report Measures of Physical Activity: A Case Study Using the New Zealand Physical Activity Questionnaire

    ERIC Educational Resources Information Center

    Mackay, Lisa M.; Schofield, Grant M.; Schluter, Philip J.

    2007-01-01

    Accurate measurement of physical activity is fundamentally important in epidemiological research of physical activity behavior. A widely used telephone-based physical activity questionnaire was compared with other methods of administration and objective measures (pedometers and accelerometers) among 80 adults (43 women). The telephone…

  10. The Job Dimensions Underlying the Job Elements of the Position Analysis Questionnaire (PAQ) (Form B). Report No. 4.

    ERIC Educational Resources Information Center

    Marquardt, Lloyd D.; McCormick, Ernest J.

    This study was concerned with the identification of the job dimension underlying the job elements of the Position Analysis Questionnaire (PAQ), Form B. The PAQ is a structured job analysis instrument consisting of 187 worker-oriented job elements which are divided into six a priori major divisions. The statistical procedure of principal components…

  11. Psychometric Evaluation of the Children's Behavior Questionnaire-Very Short Form in Preschool Children Using Parent and Teacher Report

    ERIC Educational Resources Information Center

    Allan, Nicholas P.; Lonigan, Christopher J.; Wilson, Shauna B.

    2013-01-01

    Temperament is a developmentally important construct, hierarchically comprised of several lower-order dimensions subsumed under effortful control, negative affectivity, and surgency. The Children's Behavior Questionnaire-Very Short Form (CBQ-VSF) was developed as a brief measure of the higher-order factors of temperament to aid researchers in…

  12. Brief Report: The Self Harm Questionnaire--A New Tool Designed to Improve Identification of Self Harm in Adolescents

    ERIC Educational Resources Information Center

    Ougrin, Dennis; Boege, Isabel

    2013-01-01

    The Self Harm Questionnaire (SHQ) aiming at identification of self-harm in adolescents has been developed and piloted in a sample of 12-17 year olds (n = 100). The adolescents were recruited from both in- and outpatient psychiatric services. Concurrent validity of the SHQ was evaluated by comparing the SHQ results with recorded self harm in the…

  13. The Cluster Analysis of Jobs Based on Data from the Position Analysis Questionnaire (PAQ). Report No. 7.

    ERIC Educational Resources Information Center

    DeNisi, Angelo S.; McCormick, Ernest J.

    The Position Analysis Questionnaire (PAQ) is a structured job analysis procedure that provides for the analysis of jobs in terms of each of 187 job elements, these job elements being grouped into six divisions: information input, mental processes, work output, relationships with other persons, job context, and other job characteristics. Two…

  14. Australian Staphylococcus aureus Sepsis Outcome Programme annual report, 2013.

    PubMed

    Coombs, Geoffrey W; Nimmo, Graeme R; Daly, Denise A; Le, Tam T; Pearson, Julie C; Tan, Hui-Leen; Robinson, James O; Collignon, Peter J; McLaws, Mary-Louise; Turnidge, John D

    2014-12-01

    From 1 January to 31 December 2013, around Australia 26 institutions around Australia participated in the Australian Staphylococcal Sepsis Outcome Programme (ASSOP). The aim of ASSOP 2013 was to determine the proportion of Staphylococcus aureus bacteraemia (SAB) isolates in Australia that are antimicrobial resistant, (with particular emphasis on susceptibility to methicillin) and to characterise the molecular epidemiology of the isolates. Overall 19.1% of the 2,010 SAB episodes were methicillin resistant, which is significantly higher than that reported in most European countries. Although the SAB 30-day all cause mortality appears to be decreasing in Australia, methicillin-resistant SAB associated mortality remains high (20.1%) and was significantly higher than methicillin-sensitive SAB associated mortality (13%) (P< 0.0001). With the exception of the ß-lactams and erythromycin, antimicrobial resistance in methicillin sensitive S. aureus remains rare. However, in addition to the ß-lactams, approximately 50% of methicillin-resistant S. aureus (MRSA) were resistant to erythromycin and ciprofloxacin and approximately 20% were resistant to co-trimoxazole, tetracycline and gentamicin. Linezolid, daptomycin and teicoplanin resistance was detected in a small number of S. aureus isolates. Resistance to vancomycin was not detected. Resistance was largely attributable to 2 healthcare associated MRSA clones; ST22-IV [2B] (EMRSA-15) and ST239-III [3A] (Aus-2/3 EMRSA). ST22-IV [2B] (EMRSA-15) has now become the predominant healthcare associated clone in Australia. Approximately 60% of methicillin-resistant SAB were due to community associated clones. Although polyclonal, almost 50% of community associated clones were characterised as ST93-IV [2B] (Queensland CA-MRSA) and ST1-IV [2B] (WA1). CA-MRSA, in particular the ST45-V [5C2&5] (WA84) clone, has acquired multiple antimicrobial resistance determinants including ciprofloxacin, erythromycin, clindamycin, gentamicin and

  15. Brief Report: Mediation Analysis with an Ordinal Outcome.

    PubMed

    VanderWeele, Tyler J; Zhang, Yun; Lim, Pilar

    2016-09-01

    The article presents concepts and methods for mediation analysis for an ordinal outcome. We give definitions of natural direct and indirect effects using counterfactuals for ordinal outcomes; in this context, there are potentially different effects for any two levels of the outcome, and we consider difference and ratio scales. The confounding assumptions required for identification are similar to that in the existing mediation analysis literature. We discuss different modeling strategies for estimation. Under a proportional odds model with a reference category that is common, the direct and indirect effects on a ratio scale can each be summarized by a single estimate and are available in closed form; otherwise the effects may differ across categories compared and can be obtained by numeric simulation methods. PMID:27258323

  16. NYU Institute for Education & Social Policy Progress Report Outcomes Study.

    ERIC Educational Resources Information Center

    New York Univ., NY. Inst. for Education and Social Policy.

    New York Networks for School Renewal (NYNSR) is a 5-year collaborative project begun in 1995 as part of an effort to revitalize U.S. schools through public-private partnerships. Four New York organizations with years of experience in public education reform have joined in the NYNSR collaboration. An outcomes evaluation collected and analyzed both…

  17. Oregon Pre-Engineering Learning Outcomes Study: Final Report

    ERIC Educational Resources Information Center

    Conley, David T.; Langan, Holly; Veach, Darya; Farkas, Virginia

    2007-01-01

    The Oregon Pre-engineering Learning Outcomes Project was conducted by the Educational Policy Improvement Center (EPIC) with grant funding from the Engineering and Technology Industry Council (ETIC). The study sought to improve student preparation and success in pre-engineering programs through the development of the Oregon Pre-engineering Learning…

  18. Moral Development and Life Outcomes. [Main Report and Executive Summary].

    ERIC Educational Resources Information Center

    Candee, Daniel; And Others

    Individuals who differ in moral reasoning have been found not only to achieve different stations in life but also to have considerably different values and strategies by which they conduct their lives. The nature of individuals' life outcomes was measured in this study using the status of the person's job as well as both structured and open-ended…

  19. Career Academy Programs in California: Outcomes and Implementation. CPRC Report.

    ERIC Educational Resources Information Center

    Maxwell, Nan L.; Rubin, Victor

    The outcomes and implementation of career academy programs in California were examined in a study of one school district's efforts to implement a uniform career academy model in 1990-1996. A cohort of approximately 10,000 students who were sophomores in the district's comprehensive high schools between 1990 and 1993 were followed through high…

  20. CLASSIFICATION OF IRANIAN NURSES ACCORDING TO THEIR MENTAL HEALTH OUTCOMES USING GHQ-12 QUESTIONNAIRE: A COMPARISON BETWEEN LATENT CLASS ANALYSIS AND K-MEANS CLUSTERING WITH TRADITIONAL SCORING METHOD

    PubMed Central

    Jamali, Jamshid; Ayatollahi, Seyyed Mohammad Taghi

    2015-01-01

    Background: Nurses constitute the most providers of health care systems. Their mental health can affect the quality of services and patients’ satisfaction. General Health Questionnaire (GHQ-12) is a general screening tool used to detect mental disorders. Scoring method and determining thresholds for this questionnaire are debatable and the cut-off points can vary from sample to sample. This study was conducted to estimate the prevalence of mental disorders among Iranian nurses using GHQ-12 and also compare Latent Class Analysis (LCA) and K-means clustering with traditional scoring method. Methodology: A cross-sectional study was carried out in Fars and Bushehr provinces of southern Iran in 2014. Participants were 771 Iranian nurses, who filled out the GHQ-12 questionnaire. Traditional scoring method, LCA and K-means were used to estimate the prevalence of mental disorder among Iranian nurses. Cohen’s kappa statistic was applied to assess the agreement between the LCA and K-means with traditional scoring method of GHQ-12. Results: The nurses with mental disorder by scoring method, LCA and K-mean were 36.3% (n=280), 32.2% (n=248), and 26.5% (n=204), respectively. LCA and logistic regression revealed that the prevalence of mental disorder in females was significantly higher than males. Conclusion: Mental disorder in nurses was in a medium level compared to other people living in Iran. There was a little difference between prevalence of mental disorder estimated by scoring method, K-means and LCA. According to the advantages of LCA than K-means and different results in scoring method, we suggest LCA for classification of Iranian nurses according to their mental health outcomes using GHQ-12 questionnaire PMID:26622202

  1. Patient-Reported Outcome Measures in Safety Event Reporting: PROSPER Consortium guidance.

    PubMed

    Banerjee, Anjan K; Okun, Sally; Edwards, I Ralph; Wicks, Paul; Smith, Meredith Y; Mayall, Stephen J; Flamion, Bruno; Cleeland, Charles; Basch, Ethan

    2013-12-01

    The Patient-Reported Outcomes Safety Event Reporting (PROSPER) Consortium was convened to improve safety reporting by better incorporating the perspective of the patient. PROSPER comprises industry, regulatory authority, academic, private sector and patient representatives who are interested in the area of patient-reported outcomes of adverse events (PRO-AEs). It has developed guidance on PRO-AE data, including the benefits of wider use and approaches for data capture and analysis. Patient-reported outcomes (PROs) encompass the full range of self-reporting, rather than only patient reports collected by clinicians using validated instruments. In recent years, PROs have become increasingly important across the spectrum of healthcare and life sciences. Patient-centred models of care are integrating shared decision making and PROs at the point of care; comparative effectiveness research seeks to include patients as participatory stakeholders; and industry is expanding its involvement with patients and patient groups as part of the drug development process and safety monitoring. Additionally, recent pharmacovigilance legislation from regulatory authorities in the EU and the USA calls for the inclusion of patient-reported information in benefit-risk assessment of pharmaceutical products. For patients, technological advancements have made it easier to be an active participant in one's healthcare. Simplified internet search capabilities, electronic and personal health records, digital mobile devices, and PRO-enabled patient online communities are just a few examples of tools that allow patients to gain increased knowledge about conditions, symptoms, treatment options and side effects. Despite these changes and increased attention on the perceived value of PROs, their full potential has yet to be realised in pharmacovigilance. Current safety reporting and risk assessment processes remain heavily dependent on healthcare professionals, though there are known limitations such

  2. Measuring mental health and wellbeing outcomes for children and adolescents to inform practice and policy: a review of child self-report measures.

    PubMed

    Deighton, Jessica; Croudace, Tim; Fonagy, Peter; Brown, Jeb; Patalay, Praveetha; Wolpert, Miranda

    2014-01-01

    There is a growing appetite for mental health and wellbeing outcome measures that can inform clinical practice at individual and service levels, including use for local and national benchmarking. Despite a varied literature on child mental health and wellbeing outcome measures that focus on psychometric properties alone, no reviews exist that appraise the availability of psychometric evidence and suitability for use in routine practice in child and adolescent mental health services (CAMHS) including key implementation issues. This paper aimed to present the findings of the first review that evaluates existing broadband measures of mental health and wellbeing outcomes in terms of these criteria. The following steps were implemented in order to select measures suitable for use in routine practice: literature database searches, consultation with stakeholders, application of inclusion and exclusion criteria, secondary searches and filtering. Subsequently, detailed reviews of the retained measures' psychometric properties and implementation features were carried out. 11 measures were identified as having potential for use in routine practice and meeting most of the key criteria: 1) Achenbach System of Empirically Based Assessment, 2) Beck Youth Inventories, 3) Behavior Assessment System for Children, 4) Behavioral and Emotional Rating Scale, 5) Child Health Questionnaire, 6) Child Symptom Inventories, 7) Health of the National Outcome Scale for Children and Adolescents, 8) Kidscreen, 9) Pediatric Symptom Checklist, 10) Strengths and Difficulties Questionnaire, 11) Youth Outcome Questionnaire. However, all existing measures identified had limitations as well as strengths. Furthermore, none had sufficient psychometric evidence available to demonstrate that they could reliably measure both severity and change over time in key groups. The review suggests a way of rigorously evaluating the growing number of broadband self-report mental health outcome measures against

  3. Measuring mental health and wellbeing outcomes for children and adolescents to inform practice and policy: a review of child self-report measures

    PubMed Central

    2014-01-01

    There is a growing appetite for mental health and wellbeing outcome measures that can inform clinical practice at individual and service levels, including use for local and national benchmarking. Despite a varied literature on child mental health and wellbeing outcome measures that focus on psychometric properties alone, no reviews exist that appraise the availability of psychometric evidence and suitability for use in routine practice in child and adolescent mental health services (CAMHS) including key implementation issues. This paper aimed to present the findings of the first review that evaluates existing broadband measures of mental health and wellbeing outcomes in terms of these criteria. The following steps were implemented in order to select measures suitable for use in routine practice: literature database searches, consultation with stakeholders, application of inclusion and exclusion criteria, secondary searches and filtering. Subsequently, detailed reviews of the retained measures’ psychometric properties and implementation features were carried out. 11 measures were identified as having potential for use in routine practice and meeting most of the key criteria: 1) Achenbach System of Empirically Based Assessment, 2) Beck Youth Inventories, 3) Behavior Assessment System for Children, 4) Behavioral and Emotional Rating Scale, 5) Child Health Questionnaire, 6) Child Symptom Inventories, 7) Health of the National Outcome Scale for Children and Adolescents, 8) Kidscreen, 9) Pediatric Symptom Checklist, 10) Strengths and Difficulties Questionnaire, 11) Youth Outcome Questionnaire. However, all existing measures identified had limitations as well as strengths. Furthermore, none had sufficient psychometric evidence available to demonstrate that they could reliably measure both severity and change over time in key groups. The review suggests a way of rigorously evaluating the growing number of broadband self-report mental health outcome measures against

  4. The multidimensional mortality awareness measure and model: development and validation of a new self-report questionnaire and psychological framework.

    PubMed

    Levasseur, Oona; McDermott, Mark R; Lafreniere, Kathryn D

    2015-01-01

    For each of eight literature-identified conceptual dimensions of mortality awareness, questionnaire items were generated, producing 89 in all. A total of 359 participants responded to these items and to questionnaires measuring health attitudes, risk taking, rebelliousness, and demographic variables. Multivariate correlational analyses investigated the underlying structure of the item pool and the construct validity as well as the reliability of the emergent empirically derived subscales. Five components, rather than eight, were identified. Given the item content of each, the associated mortality awareness subscales were labeled as legacy, fearfulness, acceptance, disempowerment, and disengagement. Each attained an acceptable level of internal reliability. Relationships with other variables supported the construct validity of these empirically derived subscales and more generally of this five-factor model. In conclusion, this new multidimensional measure and model of mortality awareness extends our understanding of this important aspect of human existence and supports a more integrative and optimistic approach to mortality awareness than previously available. PMID:26036058

  5. Post-Inpatient Brain Injury Rehabilitation Outcomes: Report from the National OutcomeInfo Database.

    PubMed

    Malec, James F; Kean, Jacob

    2016-07-15

    This study examined outcomes for intensive residential and outpatient/community-based post-inpatient brain injury rehabilitation (PBIR) programs compared with supported living programs. The goal of supported living programs was stable functioning (no change). Data were obtained for a large cohort of adults with acquired brain injury (ABI) from the OutcomeInfo national database, a web-based database system developed through National Institutes of Health (NIH) Small Business Technology Transfer (STTR) funding for monitoring progress and outcomes in PBIR programs primarily with the Mayo-Portland Adaptability Inventory (MPAI-4). Rasch-derived MPAI-4 measures for cases from 2008 to 2014 from 9 provider organizations offering programs in 23 facilities throughout the United States were examined. Controlling for age at injury, time in program, and time since injury on admission (chronicity), both intensive residential (n = 205) and outpatient/community-based (n = 2781) programs resulted in significant (approximately 1 standard deviation [SD]) functional improvement on the MPAI-4 Total Score compared with supported living (n = 101) programs (F = 18.184, p < 0.001). Intensive outpatient/community-based programs showed greater improvements on MPAI-4 Ability (F = 14.135, p < 0.001), Adjustment (F = 12.939, p < 0.001), and Participation (F = 16.679, p < 0.001) indices than supported living programs; whereas, intensive residential programs showed improvement primarily in Adjustment and Participation. Age at injury and time in program had small effects on outcome; the effect of chronicity was small to moderate. Examination of more chronic cases (>1 year post-injury) showed significant, but smaller (approximately 0.5 SD) change on the MPAI-4 relative to supported living programs (F = 17.562, p < 0.001). Results indicate that intensive residential and outpatient/community-based PIBR programs result in substantial positive

  6. The Cervical Dystonia Impact Profile (CDIP-58): Can a Rasch developed patient reported outcome measure satisfy traditional psychometric criteria?

    PubMed Central

    Cano, Stefan J; Warner, Thomas T; Thompson, Alan J; Bhatia, Kailash P; Fitzpatrick, Ray; Hobart, Jeremy C

    2008-01-01

    Background The United States Food and Drug Administration (FDA) are currently producing guidelines for the scientific adequacy of patient reported outcome measures (PROMs) in clinical trials, which will have implications for the selection of scales used in future clinical trials. In this study, we examine how the Cervical Dystonia Impact Profile (CDIP-58), a rigorous Rasch measurement developed neurologic PROM, stands up to traditional psychometric criteria for three reasons: 1) provide traditional psychometric evidence for the CDIP-58 in line with proposed FDA guidelines; 2) enable researchers and clinicians to compare it with existing dystonia PROMs; and 3) help researchers and clinicians bridge the knowledge gap between old and new methods of reliability and validity testing. Methods We evaluated traditional psychometric properties of data quality, scaling assumptions, targeting, reliability and validity in a group of 391 people with CD. The main outcome measures used were the CDIP-58, Medical Outcome Study Short Form-36, the 28-item General Health Questionnaire, and Hospital and Anxiety and Depression Scale. Results A total of 391 people returned completed questionnaires (corrected response rate 87%). Analyses showed: 1) data quality was high (low missing data ≤ 4%, subscale scores could be computed for > 96% of the sample); 2) item groupings passed tests for scaling assumptions; 3) good targeting (except for the Sleep subscale, ceiling effect = 27%); 4) good reliability (Cronbach's alpha ≥ 0.92, test-retest intraclass correlations ≥ 0.83); and 5) validity was supported. Conclusion This study has shown that new psychometric methods can produce a PROM that stands up to traditional criteria and supports the clinical advantages of Rasch analysis. PMID:18684327

  7. Patient-reported outcomes of caries prophylaxis among Swedish caries active adults in a long-term perspective.

    PubMed

    Flink, Håkan; Tegelberg, Åke; Arnetz, Judy; Birkhed, Dowen

    2016-01-01

    The aim of this study was to measure patient-reported outcomes of caries prophylaxis and to compare them with previously documented efforts in dental offices. A questionnaire was mailed to 134 caries active (CA) and 40 caries inactive (CI) adult patients treated at a Swedish public dental service clinic. The overall response rate was 69%. The questionnaire included items regarding patient perceived caries prophylaxis in relation to: 1) treatment and recommendations given by the dental personnel, 2) performed self-care and 3) perceived and expected effects.The responses were studied for their association to clinical data, extracted retrospectively from the patients' dental records.The mean follow up time was > 16 years. Information about caries prophylaxis (p = 0.01) and recommendations for self-care (p = 0.04) were given more often to the CA group than to the CI group. Supplementary examinations and recommendations of self-care risk treatments were more frequent in the CA group (p < 0.001). CA patients also made more frequent extra efforts at home to avoid caries by changing their eating habits (p < 0.001), improving their oral hygiene (p = 0.04) and using extra fluoride (p = 0.001). In the CA group, 60% did not considerthat the extra prophylaxis efforts had made them caries inactive, and 40% were not satisfied with the outcome. Most patients (> 90%) hoped that the outcome of caries prophylactics would be a reduced number of cavities.The patient-perceived experiences of caries prophylaxis-were in concordance with dental records. Both the dentists and the caries active middle-aged Swedish adults were aware of the need for extra prophylaxis.The caries active patients perceived having made extra home care efforts, but had not experienced that they had become free from caries. PMID:27464386

  8. Brief report: the adolescent Child-to-Parent Aggression Questionnaire: an examination of aggressions against parents in Spanish adolescents.

    PubMed

    Calvete, E; Gamez-Guadix, M; Orue, I; Gonzalez-Diez, Z; Lopez de Arroyabe, E; Sampedro, R; Pereira, R; Zubizarreta, A; Borrajo, E

    2013-12-01

    The objective of this study was to develop a questionnaire to assess child-to-parent aggression in adolescents and to document the extent of the problem. The questionnaire developed in this study, the Child-to-Parent Aggression Questionnaire (CPAQ), includes forms of physical and psychological aggression directed at both the mother and the father. It also includes open questions about the reasons for the aggressive acts. The CPAQ was completed by a sample of 2719 adolescents (age range: 13-18 years old, 51.4% girls). Confirmatory factor analysis supported a four-factor correlated structure (physical aggression against mother, physical aggression against father, psychological aggression against mother, and psychological aggression against father). Psychological and physical aggression against the mother was more frequent than against the father. However, there were no differences with regard to severe forms of aggression. Girls scored significantly higher on all indicators of psychological aggression, including severe psychological aggression. Nevertheless, except for the prevalence of physical aggression against mothers, which was higher in females, there were no significant differences in physical aggression against parents. Finally, the reasons provided by the adolescents for the aggression included both instrumental (e.g., to obtain permission to get home late and to access their computers) and reactive reasons (e.g., anger and self-defense). These findings highlight the complexity of child-to-parent aggression in adolescence. PMID:24215954

  9. Adverse outcome pathways: From research to regulation scientific workshop report.

    PubMed

    Kleinstreuer, Nicole C; Sullivan, Kristie; Allen, David; Edwards, Stephen; Mendrick, Donna L; Embry, Michelle; Matheson, Joanna; Rowlands, J Craig; Munn, Sharon; Maull, Elizabeth; Casey, Warren

    2016-04-01

    An adverse outcome pathway (AOP) helps to organize existing knowledge on chemical mode of action, starting with a molecular initiating event such as receptor binding, continuing through key events, and ending with an adverse outcome such as reproductive impairment. AOPs can help identify knowledge gaps where more research is needed to understand the underlying mechanisms, aid in chemical hazard characterization, and guide the development of new testing approaches that use fewer or no animals. A September 2014 workshop in Bethesda, Maryland considered how the AOP concept could improve regulatory assessments of chemical toxicity. Scientists from 21 countries, representing industry, academia, regulatory agencies, and special interest groups, attended the workshop, titled Adverse Outcome Pathways: From Research to Regulation. Workshop plenary presentations were followed by breakout sessions that considered regulatory acceptance of AOPs and AOP-based tools, criteria for building confidence in an AOP for regulatory use, and requirements to build quantitative AOPs and AOP networks. Discussions during the closing session emphasized a need to increase transparent and inclusive collaboration, especially with disciplines outside of toxicology. Additionally, to increase impact, working groups should be established to systematically prioritize and develop AOPs. Multiple collaborative projects and follow-up activities resulted from the workshop. PMID:26774756

  10. Clinical and Patient-reported Outcomes of a Zirconia Oral Implant: Three-year Results of a Prospective Cohort Investigation.

    PubMed

    Spies, B C; Balmer, M; Patzelt, S B M; Vach, K; Kohal, R J

    2015-10-01

    The objective of this study was to determine the clinical, radiographic, and patient-reported outcomes of a 1-piece alumina-toughened zirconia implant restored with single crowns (SCs) or 3-unit fixed dental prostheses (FDPs) after 3 y of observation. Forty patients received 53 implants, placed in a 1-stage operation with immediate temporization. Finally, 50 implants were restored with 24 SCs and 13 FDPs. To evaluate peri-implant bone loss, standardized radiographs were taken at implant insertion, at final restoration delivery, and after 1 and 3 y. Additionally, several soft tissue parameters and patient-reported outcome measures were evaluated. Linear mixed models with random intercept for each patient and patients as clusters were used to compare subgroups. Three patients did not receive a SC due to early implant loss, and 1 patient died. As a result, 36 patients with 49 implants were followed-up for 3 y, giving a cumulative survival rate of 94.2%. The average marginal bone loss amounted to 0.79 mm (SCs, 0.47 mm; FDPs, 1.07 mm; P < 0.001). After the delivery of the final prosthetic restoration, further bone loss was not statistically significant (0.09 mm; P = 0.700). Probing depth, clinical attachment level, and modified bleeding index increased significantly at the implant sites, whereas gingival recession decreased significantly. Compared with the pretreatment questionnaires, the patient-reported outcome measures showed a permanently improved perception of function, aesthetics, sense, speech and self-esteem. The survival rate of the investigated ceramic implant system seems to be comparable to reported survival rates of titanium implants when immediately restored. The recorded parameters suggest its potential for clinical utilization. PMID:26232388

  11. Focus Report on Plan To Assess Student Outcomes, Mohave Community College.

    ERIC Educational Resources Information Center

    Mohave Community Coll., Kingman, AZ.

    In response to an accreditation requirement, this report describes Mohave Community College's plan for assessing student achievement. Section I, "History of Plan Development," outlines the process used to develop a comprehensive, institutional plan for assessing student outcomes. In section II, "Institutional Effectiveness and Student Outcomes," a…

  12. The Instrumental Side of Corporal Punishment: Parents' Reported Practices and Outcome Expectancies.

    ERIC Educational Resources Information Center

    Holden, George W.; Miller, Pamela C.; Harris, Susan D.

    1999-01-01

    Reports on two studies that assessed the relationship between mothers' and fathers' disciplinary practices with three-year-olds and outcome expectancies. Mothers who used corporal punishment at least once a week believed that it was more likely to result in positive outcomes than mothers who never or occasionally spanked. No significant…

  13. The Importance of Hand Appearance as a Patient-Reported Outcome in Hand Surgery

    PubMed Central

    Johnson, Shepard P.; Sebastin, Sandeep J.; Rehim, Shady A.

    2015-01-01

    Summary: Hand appearance is meaningful to patients because hands are an essential part of human interactions, communication, and social integration. Recent literature indicates that hand aesthetics is an important, measurable patient-reported outcome. In hand surgery, several outcome instruments exist that accurately measure functional outcomes, but aesthetics is often overlooked or imprecisely measured. This makes comparison of disease burden and effectiveness of therapies, as they pertain to aesthetics, difficult. This special topic article outlines the aesthetic features of the hand, how literature is evaluating the appearance of the hand in outcomes research, and proposes a novel approach to assessing hand aesthetics. PMID:26893977

  14. Outcome Reporting in Cardiac Surgery Trials: Systematic Review and Critical Appraisal

    PubMed Central

    Goldfarb, Michael; Drudi, Laura; Almohammadi, Mohammad; Langlois, Yves; Noiseux, Nicolas; Perrault, Louis; Piazza, Nicolo; Afilalo, Jonathan

    2015-01-01

    Background There is currently no accepted standard for reporting outcomes following cardiac surgery. The objective of this paper was to systematically review the literature to evaluate the current use and definition of perioperative outcomes reported in cardiac surgery trials. Methods and Results We reviewed 5 prominent medical and surgical journals on Medline from January 1, 2010, to June 30, 2014, for randomized controlled trials involving coronary artery bypass grafting and/or valve surgery. We identified 34 trials meeting inclusion criteria. Sample sizes ranged from 57 to 4752 participants (median 351). Composite end points were used as a primary outcome in 56% (n=19) of the randomized controlled trials and as a secondary outcome in 12% (n=4). There were 14 different composite end points. Mortality at any time (all-cause and/or cardiovascular) was reported as an individual end point or as part of a combined end point in 82% (n=28), myocardial infarction was reported in 68% (n=23), and bleeding was reported in 24% (n=8). Patient-centered outcomes, such as quality of life and functional classification, were reported in 29% (n=10). Definition of clinical events such as myocardial infarction, stroke, renal failure, and bleeding varied considerably among trials, particularly for postoperative myocardial infarction and bleeding, for which 8 different definitions were used for each. Conclusions Outcome reporting in the cardiac surgery literature is heterogeneous, and efforts should be made to standardize the outcomes reported and the definitions used to ascertain them. The development of standardizing outcome reporting is an essential step toward strengthening the process of evidence-based care in cardiac surgery. PMID:26282561

  15. Incorporating Patient-Reported Outcomes Into Health Care To Engage Patients And Enhance Care.

    PubMed

    Lavallee, Danielle C; Chenok, Kate E; Love, Rebecca M; Petersen, Carolyn; Holve, Erin; Segal, Courtney D; Franklin, Patricia D

    2016-04-01

    The provision of patient-centered care requires a health care environment that fosters engagement between patients and their health care team. One way to encourage patient-centered care is to incorporate patient-reported outcomes into clinical settings. Collecting these outcomes in routine care ensures that important information only the patient can provide is captured. This provides insights into patients' experiences of symptoms, quality of life, and functioning; values and preferences; and goals for health care. Previously embraced in the research realm, patient-reported outcomes have started to play a role in successful shared decision making, which can enhance the safe and effective delivery of health care. We examine the opportunities for using patient-reported outcomes to enhance care delivery and outcomes as health care information needs and technology platforms change. We highlight emerging practices in which patient-reported outcomes provide value to patients and clinicians and improve care delivery. Finally, we examine present and future challenges to maximizing the use of patient-reported outcomes in the clinic. PMID:27044954

  16. Management of Patient-Reported Outcome (PRO) Alerts in Clinical Trials: A Cross Sectional Survey.

    PubMed Central

    Kyte, Derek; Ives, Jonathan; Draper, Heather; Calvert, Melanie

    2016-01-01

    Background Assessment of patient-reported outcomes (PROs) provides valuable information to inform patient-centered care, but may also reveal ‘PRO alerts’: psychological distress or physical symptoms that may require an immediate response. Ad-hoc management of PRO alerts in clinical trials may result in suboptimal patient care or potentially bias trial results. To gain greater understanding of current practice in PRO alert management we conducted a national survey of personnel involved in clinical trials with a PRO endpoint. Methods and Findings We conducted a national cross-sectional survey of 767 UK-based research nurses, data managers/coordinators, trial managers and chief/principal investigators involved in clinical trials using PROs. Respondents were self-selected volunteers from a non-randomised sample of eligible individuals recruited via 55 UK Clinical Research Collaboration Registered Clinical Trials Units and 19 Comprehensive Local Research Networks. Questions centred on the proportion of trial personnel encountering alerts, how staff responded to PRO alerts and whether current guidance was deemed sufficient to support research personnel. We undertook descriptive analyses of the quantitative data and directed thematic analysis of free-text comments. 20% of research nurses did not view completed PRO questionnaires and were not in a position to discover alerts, 39–50% of the remaining respondent group participants reported encountering PRO alerts. Of these, 83% of research nurses and 54% of data managers/trial coordinators reported taking action to assist the trial participant, but less than half were able to record the intervention in the trial documentation. Research personnel reported current PRO alert guidance/training was insufficient. Conclusions Research personnel are intermittently exposed to PRO alerts. Some intervene to help trial participants, but are not able to record this intervention in the trial documentation, risking co

  17. The Computer-based Health Evaluation Software (CHES): a software for electronic patient-reported outcome monitoring

    PubMed Central

    2012-01-01

    Background Patient-reported Outcomes (PROs) capturing e.g., quality of life, fatigue, depression, medication side-effects or disease symptoms, have become important outcome parameters in medical research and daily clinical practice. Electronic PRO data capture (ePRO) with software packages to administer questionnaires, storing data, and presenting results has facilitated PRO assessment in hospital settings. Compared to conventional paper-pencil versions of PRO instruments, ePRO is more economical with regard to staff resources and time, and allows immediate presentation of results to the medical staff. The objective of our project was to develop software (CHES – Computer-based Health Evaluation System) for ePRO in hospital settings and at home with a special focus on the presentation of individual patient’s results. Methods Following the Extreme Programming development approach architecture was not fixed up-front, but was done in close, continuous collaboration with software end users (medical staff, researchers and patients) to meet their specific demands. Developed features include sophisticated, longitudinal charts linking patients’ PRO data to clinical characteristics and to PRO scores from reference populations, a web-interface for questionnaire administration, and a tool for convenient creating and editing of questionnaires. Results By 2012 CHES has been implemented at various institutions in Austria, Germany, Switzerland, and the UK and about 5000 patients participated in ePRO (with around 15000 assessments in total). Data entry is done by the patients themselves via tablet PCs with a study nurse or an intern approaching patients and supervising questionnaire completion. Discussion During the last decade several software packages for ePRO have emerged for different purposes. Whereas commercial products are available primarily for ePRO in clinical trials, academic projects have focused on data collection and presentation in daily clinical practice and

  18. Using Patient Reported Outcome Measures to Improve Service Effectiveness (UPROMISE): Training clinicians to Use Outcome Measures in Child Mental Health.

    PubMed

    Edbrooke-Childs, Julian; Wolpert, Miranda; Deighton, Jessica

    2016-05-01

    Patient reported outcome measures (PROMs) are prevalent in child mental health services. In this point of view, we discuss our experience of training clinicians to use PROMs and to interpret and discuss feedback from measures. Findings from pre-post observational data from clinicians who attended either a 1- or 3-day training course showed that clinicians in both courses had more positive attitudes and higher levels of self-efficacy regarding administering measures and using feedback after training. We hope that this special issue will lead the way for future research on training clinicians to use outcome measures so that PROMs may be a source of clinically useful practice based evidence. PMID:25331446

  19. Discrepancies in Outcome Reporting Exist Between Protocols and Published Oral Health Cochrane Systematic Reviews

    PubMed Central

    Pandis, Nikolaos; Fleming, Padhraig S.; Worthington, Helen; Dwan, Kerry; Salanti, Georgia

    2015-01-01

    Objectives To assess discrepancies in the analyzed outcomes between protocols and published reviews within Cochrane oral health systematic reviews (COHG) on the Cochrane Database of Systematic Reviews (CDSR). Study Design and Setting All COHG systematic reviews on the CDSR and the corresponding protocols were retrieved in November 2014 and information on the reported outcomes was recorded. Data was collected at the systematic review level by two reviewers independently. Results One hundred and fifty two reviews were included. In relation to primary outcomes, 11.2% were downgraded to secondary outcomes, 9.9% were omitted altogether in the final publication and new primary outcomes were identified in 18.4% of publications. For secondary outcomes, 2% were upgraded to primary, 12.5% were omitted and 30.9% were newly introduced in the publication. Overall, 45.4% of reviews had at least one discrepancy when compared to the protocol; these were reported in 14.5% reviews. The number of review updates appears to be associated with discrepancies between final review and protocol (OR: 3.18, 95% CI: 1.77, 5.74, p<0.001). The risk of reporting significant results was lower for both downgraded outcomes [RR: 0.52, 95% CI: 0.17, 1.58, p = 0.24] and upgraded or newly introduced outcomes [RR: 0.77, 95% CI: 0.36, 1.64, p = 0.50] compared to outcomes with no discrepancies. The risk of reporting significant results was higher for upgraded or newly introduced outcomes compared to downgraded outcomes (RR = 1.19, 95% CI: 0.65, 2.16, p = 0.57). None of the comparisons reached statistical significance. Conclusion While no evidence of selective outcome reporting was found in this study, based on the present analysis of SRs published within COHG systematic reviews, discrepancies between outcomes in pre-published protocols and final reviews continue to be common. Solutions such as the use of standardized outcomes to reduce the prevalence of this issue may need to be explored. PMID:26368938

  20. Current treatment practice and outcomes. Report of the hyponatremia registry.

    PubMed

    Greenberg, Arthur; Verbalis, Joseph G; Amin, Alpesh N; Burst, Volker R; Chiodo, Joseph A; Chiong, Jun R; Dasta, Joseph F; Friend, Keith E; Hauptman, Paul J; Peri, Alessandro; Sigal, Samuel H

    2015-07-01

    Current management practices for hyponatremia (HN) are incompletely understood. The HN Registry has recorded diagnostic measures, utilization, efficacy, and outcomes of therapy for eu- or hypervolemic HN. To better understand current practices, we analyzed data from 3087 adjudicated adult patients in the registry with serum sodium concentration of 130 mEq/l or less from 225 sites in the United States and European Union. Common initial monotherapy treatments were fluid restriction (35%), administration of isotonic (15%) or hypertonic saline (2%), and tolvaptan (5%); 17% received no active agent. Median (interquartile range) mEq/l serum sodium increases during the first day were as follows: no treatment, 1.0 (0.0-4.0); fluid restriction, 2.0 (0.0-4.0); isotonic saline, 3.0 (0.0-5.0); hypertonic saline, 5.0 (1.0-9.0); and tolvaptan, 4.0 (2.0-9.0). Adjusting for initial serum sodium concentration with logistic regression, the relative likelihoods for correction by 5 mEq/l or more (referent, fluid restriction) were 1.60 for hypertonic saline and 2.55 for tolvaptan. At discharge, serum sodium concentration was under 135 mEq/l in 78% of patients and 130 mEq/l or less in 49%. Overly rapid correction occurred in 7.9%. Thus, initial HN treatment often uses maneuvers of limited efficacy. Despite an association with poor outcomes and availability of effective therapy, most patients with HN are discharged from hospital still hyponatremic. Studies to assess short- and long-term benefits of correction of HN with effective therapies are needed. PMID:25671764

  1. Addressing Missing Data in Patient-Reported Outcome Measures (PROMS): Implications for the Use of PROMS for Comparing Provider Performance.

    PubMed

    Gomes, Manuel; Gutacker, Nils; Bojke, Chris; Street, Andrew

    2016-05-01

    Patient-reported outcome measures (PROMs) are now routinely collected in the English National Health Service and used to compare and reward hospital performance within a high-powered pay-for-performance scheme. However, PROMs are prone to missing data. For example, hospitals often fail to administer the pre-operative questionnaire at hospital admission, or patients may refuse to participate or fail to return their post-operative questionnaire. A key concern with missing PROMs is that the individuals with complete information tend to be an unrepresentative sample of patients within each provider and inferences based on the complete cases will be misleading. This study proposes a strategy for addressing missing data in the English PROM survey using multiple imputation techniques and investigates its impact on assessing provider performance. We find that inferences about relative provider performance are sensitive to the assumptions made about the reasons for the missing data. © 2015 The Authors. Health Economics Published by John Wiley & Sons Ltd. PMID:25740592

  2. Are we using appropriate self-report questionnaires for detecting anxiety and depression in women with early breast cancer?

    PubMed

    Hall, A; A'Hern, R; Fallowfield, L

    1999-01-01

    The aim of this prospective study was to identify the psychiatric morbidity associated with the diagnosis and treatment of early breast cancer. At each of five time points, 269 women were interviewed using a shortened version of the Present State Examination (PSE) and 266 completed self-assessment questionnaires, the Hospital and Anxiety Depression Scale (HADS) and the Rotterdam Symptom Checklist (RSCL). This paper compares the ability of the questionnaires to detect psychiatric morbidity with that of the PSE. The majority of women who experienced anxiety and/or depression did so within 3 months of their initial surgery. The clinical interview identified anxiety disorder in 132 of 266 women (49.6%) and depressive illness in 99/266 (37.2%) during the first 3 months. Using the recommended threshold of > or = 11 for caseness, the sensitivities for both tests were very low at 24.2% (HADS anxiety) and 14.1% (HADS depression) and 30.6% (RSCL psychological distress scale). Lowering the threshold value to > or = 7 on the HADS improved the sensitivity to 72% for the anxiety subscale, but it remained low at 37.4% for the depression subscale. A threshold of > or = 7 for the RSCL scale raised sensitivity to 66.7%. Lowering the threshold values raised the sensitivity of both the instruments but decreased their specificity: the lower the threshold, the greater the number of women who were identified as false positives which would increase the work load for clinic staff if used as a screening tool. Given that the HADS was inadequate in discriminating for depressive illness, it was not surprising that its use as a unitary scale with a threshold value as low as 12 resulted in a sensitivity of only 42.7%. In the light of these findings, we question the use of both the HADS and the RSCL as suitable research or screening instruments for detection of psychological morbidity in early breast cancer. PMID:10211092

  3. Completeness of Reporting of Patient-Relevant Clinical Trial Outcomes: Comparison of Unpublished Clinical Study Reports with Publicly Available Data

    PubMed Central

    Wieseler, Beate; Wolfram, Natalia; McGauran, Natalie; Kerekes, Michaela F.; Vervölgyi, Volker; Kohlepp, Petra; Kamphuis, Marloes; Grouven, Ulrich

    2013-01-01

    Background Access to unpublished clinical study reports (CSRs) is currently being discussed as a means to allow unbiased evaluation of clinical research. The Institute for Quality and Efficiency in Health Care (IQWiG) routinely requests CSRs from manufacturers for its drug assessments. Our objective was to determine the information gain from CSRs compared to publicly available sources (journal publications and registry reports) for patient-relevant outcomes included in IQWiG health technology assessments (HTAs) of drugs. Methods and Findings We used a sample of 101 trials with full CSRs received for 16 HTAs of drugs completed by IQWiG between 15 January 2006 and 14 February 2011, and analyzed the CSRs and the publicly available sources of these trials. For each document type we assessed the completeness of information on all patient-relevant outcomes included in the HTAs (benefit outcomes, e.g., mortality, symptoms, and health-related quality of life; harm outcomes, e.g., adverse events). We dichotomized the outcomes as “completely reported” or “incompletely reported.” For each document type, we calculated the proportion of outcomes with complete information per outcome category and overall. We analyzed 101 trials with CSRs; 86 had at least one publicly available source, 65 at least one journal publication, and 50 a registry report. The trials included 1,080 patient-relevant outcomes. The CSRs provided complete information on a considerably higher proportion of outcomes (86%) than the combined publicly available sources (39%). With the exception of health-related quality of life (57%), CSRs provided complete information on 78% to 100% of the various benefit outcomes (combined publicly available sources: 20% to 53%). CSRs also provided considerably more information on harms. The differences in completeness of information for patient-relevant outcomes between CSRs and journal publications or registry reports (or a combination of both) were statistically

  4. Using virtual humans to alleviate social anxiety: preliminary report from a comparative outcome study.

    PubMed

    Robillard, Genevève; Bouchard, Stéphane; Dumoulin, Stéphane; Guitard, Tanya; Klinger, Evelyne

    2010-01-01

    Empirical studies have consistently shown the effectiveness of a multicomponent CBT treatment of social anxiety disorder (SAD). Previous outcome studies on virtual reality and SAD have focused on people suffering from fear of public speaking and not full blown SAD. In this study, 45 adults receiving a DSM-IV-TR diagnostic of social anxiety were randomly assigned to traditional CBT treatment (with in vivo exposure), CBT-VR combined treatment, or a waiting list. Results show significant reduction of anxiety on all questionnaires as well as statistically significant interactions between both treatment groups and the waiting list. PMID:20543270

  5. Current-reported outcome domains in studies of adults with a focus on the treatment of tinnitus: protocol for a systematic review

    PubMed Central

    Hall, Deborah A; Szczepek, Agnieszka J; Kennedy, Veronica; Haider, Haúla

    2015-01-01

    Introduction In Europe alone, over 70 million people experience tinnitus. Despite its considerable socioeconomic relevance, progress in developing successful treatments has been limited. Clinical effectiveness is judged according to change in primary outcome measures, but because tinnitus is a subjective condition, the definition of outcomes is challenging and it remains unclear which distinct aspects of tinnitus (ie, ‘domains’) are most relevant for assessment. The development of a minimum outcome reporting standard would go a long way towards addressing these problems. In 2006, a consensus meeting recommended using 1 of 4 questionnaires for tinnitus severity as an outcome in clinical trials, in part because of availability in different language translations. Our initiative takes an approach motivated by clinimetrics, first by determining what to measure before seeking to determine how to measure it. Agreeing on the domains that contribute to tinnitus severity (ie, ‘what’) is the first step towards achieving a minimum outcome reporting standard for tinnitus that has been reached via a methodologically rigorous and transparent process. Methods and analysis Deciding what should be the core set of outcomes requires a great deal of discussion and so lends itself well to international effort. This protocol lays out the first-step methodology in defining a Core Domain Set for clinical trials of tinnitus by establishing existing knowledge and practice with respect to which outcome domains have been measured and which instruments used in recent registered and published clinical trials. Ethics and dissemination No ethical issues are foreseen. Findings will be reported at national and international ear, nose and throat (ENT) and audiology conferences and in a peer-reviewed journal, using PRISMA (Preferred Reporting Items for Systematic reviews and Meta-analysis) guidelines. Trial registration number The systematic review protocol is registered on PROSPERO

  6. Ocular trauma treated with pars plana vitrectomy: early outcome report

    PubMed Central

    Mansouri, Mohammad Reza; Tabatabaei, Seyed Ali; Soleimani, Mohammad; Kiarudi, Mohammad Yaser; Molaei, Saber; Rouzbahani, Mehdi; Mireshghi, Meysam; Zaeferani, Mohsen; Ghasempour, Mehrbod

    2016-01-01

    AIM To evaluate demographic variables and visual outcomes, among patients with ocular injuries involving the posterior segment, managed with pars plana vitrectomy. METHODS The records of patients were studied retrospectively from March to September 2010, to determine the age, gender, place of occurrence of trauma, visual acuity, anatomical site, nature of injury, wound length, the presence of an afferent pupillary defect, and the timing of vitrectomy. The Ocular Trauma Score was measured. The minimum follow-up from presentation was 6mo. RESULTS Ninety patients (77 males, 13 females), with a mean age of 32.7±15.8y were included over the 6-month period. The majority of cases occurred in the workplace (47 patients), followed by home (14 patients). The mean visual acuity (logMAR) of patients significantly improved from 2.36±0.72 preoperatively to 1.50±1.14 postoperatively. Twenty-three patients had preoperative vision better than 2.0 logMAR, the postoperative visual acuity was significantly better among these patients than patients with worse than 2.0 logMAR (P<0.001). Visual improvement between groups with early vitrectomy (<7d) and delayed vitrectomy (>7d) was not significantly different (P=0.66). Postoperative visual acuity was not significantly different between patients with injury in Zone I and II (P=0.64), but patients with injury in Zone III had significantly poorer visual acuity (P=0.02). Patients with relative afferent pupillary defect had significantly poorer postoperative visual acuity (P=0.02). Preoperative visual acuity, the difference of preoperative and postoperative visual acuity, and postoperative visual acuity were significantly different between groups with different ocular trauma scores (P<0.001). CONCLUSION Trauma is more likely to occur in men under 40y of age and in the workplace. The favorable final visual outcome is associated with the absence of afferent pupillary defect, ocular trauma score and presenting visual acuity as well as the zone

  7. Student Self-Reported Learning Outcomes of Field Trips: The pedagogical impact

    NASA Astrophysics Data System (ADS)

    Lavie Alon, Nirit; Tal, Tali

    2015-05-01

    In this study, we used the classification and regression trees (CART) method to draw relationships between student self-reported learning outcomes in 26 field trips to natural environments and various characteristics of the field trip that include variables associated with preparation and pedagogy. We wished to examine the extent to which the preparation for the field trip, its connection to the school curriculum, and the pedagogies used, affect students' self-reported outcomes in three domains: cognitive, affective, and behavioral; and the extent the students' socioeconomic group and the guide's affiliation affect students' reported learning outcomes. Given that most of the field trips were guide-centered, the most important variable that affected the three domains of outcomes was the guide's storytelling. Other variables that showed relationships with self-reported outcomes were physical activity and making connections to everyday life-all of which we defined as pedagogical variables. We found no significant differences in student self-reported outcomes with respect to their socioeconomic group and the guide's organizational affiliation.

  8. What has to happen before we report radical prostatectomy outcomes of individual surgeons to the public?

    PubMed Central

    Vickers, Andrew; Eastham, James

    2010-01-01

    Summary It would appear entirely uncontroversial to suggest that prostate cancer patients should have available information on surgeon outcomes so that they can make informed treatment decisions. We argue that release of surgeon-level data on radical prostatectomy outcomes would be premature at the current time. We point to a series of problems that would need to be addressed before we could be sure that a consumerist approach to surgeon selection would do more good than harm. These include non-standardized reporting of endpoints such as urinary and erectile function, statistically unreliable estimates from low volume surgeons and perverse incentives, such as referring of high risk patients to radiotherapy. We recommend an alternative to the “name-and-shame” paradigm of public outcomes reporting: continuous quality improvement. Surgeons are given reports as to their own outcomes on a private basis, such that no-one else can see their data. This helps to build trust and to avoid perverse incentives. Such reports must be multi-dimensional and based on a comprehensive, patient-reported outcomes system. As outcomes data are meaningless for low volume surgeons, these surgeons would have to choose between focusing on radical prostatectomy and referring patients to higher volume colleagues. Systematic research is required to determine whether such an approach would do more good than harm. PMID:20884248

  9. The BODY-Q: A Patient-Reported Outcome Instrument for Weight Loss and Body Contouring Treatments

    PubMed Central

    Cano, Stefan J.; Alderman, Amy; Soldin, Mark; Thoma, Achilles; Robson, Sam; Kaur, Manraj; Papas, Athanasios; Van Laeken, Nancy; Taylor, Valerie H.; Pusic, Andrea L.

    2016-01-01

    Background: Body contouring performed for cosmetic purposes, or after weight loss, has the potential to improve body image and health-related quality of life (HRQL). The BODY-Q is a new patient-reported outcome (PRO) instrument designed to measure patient perceptions of weight loss and/or body contouring. In this article, we describe the psychometric properties of the BODY-Q scales after an international field-test. Methods: Weight loss and body contouring patients from Canada, United States, and United Kingdom were recruited between November 2013 and February 2015. Data were collected using an iPad directly into a web-based application or a questionnaire booklet. Rasch measurement theory analysis was used for item reduction and to examine reliability, validity, and ability to detect change. Results: The sample included 403 weight loss and 331 body contouring patients. Most BODY-Q items had ordered thresholds (134/138) and good item fit. Scale reliability was acceptable, ie, Person separation index >0.70 for 16 scales, Cronbach α ≥0.90 for 18 of 18 scales, and Test–retest ≥0.87 for 17 of 18 scales. Appearance and HRQL scores were lower in participants with more obesity-related symptoms, higher body mass index, and more excess skin and in those pre- versus postoperative body contouring. The 134 weight loss patients who completed the BODY-Q twice, either 6 weeks (weight loss/nonsurgical body contouring program) or 6 months (bariatric program) later, improved significantly on 7 appearance and 4 HRQL scales. Conclusion: The BODY-Q is a clinically meaningful and scientifically sound patient-reported outcome instrument that can be used to measure outcomes in patients who undergo weight loss and/or body contouring. PMID:27200241

  10. Association between mobile phone use and self-reported well-being in children: a questionnaire-based cross-sectional study in Chongqing, China

    PubMed Central

    Zheng, Feizhou; Gao, Peng; He, Mindi; Li, Min; Tan, Jin; Chen, Daiwei; Zhou, Zhou; Yu, Zhengping; Zhang, Lei

    2015-01-01

    Objectives In the past decade, the mobile phone (MP) has become extremely popular among children and the average age at which children own their first MP has decreased. The potential health effects of children’s exposure to MP have been the subject of widespread public concern. The aim of our study is to investigate the associations between MP use and well-being in children. Design Cross-sectional study. Setting The questionnaires were completed in class with items regarding demographics, MP usage, self-reported well-being (symptoms were taken from the questionnaire of the HBSC survey) and possible confounding factors between October 2011 and May 2012 in Chongqing, China. Data were analysed using χ2 tests and logistic regression models. Participants Among the 793 children invited to participate, 781 returned the questionnaires. Results In total, 746 (94.1%) valid questionnaires were received. Fatigue was significantly associated with the years of MP usage (OR 1.85; 95% CI 1.07 to 3.22) and the daily duration of MP calls (OR 2.98; 95% CI 1.46 to 6.12). Headache was significantly associated with the daily duration of MP calls (OR 2.85; 95% CI 1.23 to 6.57). However, after adjusting for confounders only, the association between fatigue and MP usage remained statistically significant. There was no significant association between MP use and other physical symptoms in children. Conclusions The present study indicated that there was a consistent significant association between MP use and fatigue in children. Further in-depth research is needed to explore the potential health effects of MP use in children. PMID:25967996

  11. Maternal report of young children's eating styles. Validation of the Children's Eating Behaviour Questionnaire in three ethnically diverse Australian samples.

    PubMed

    Mallan, Kimberley M; Liu, Wei-Hong; Mehta, Rati Jani; Daniels, Lynne A; Magarey, Anthea; Battistutta, Diana

    2013-05-01

    The aim of this study was to validate the Children's Eating Behaviour Questionnaire (CEBQ) in three ethnically and culturally diverse samples of mothers in Australia. Confirmatory factor analysis utilising structural equation modelling examined whether the established 8-factor model of the CEBQ was supported in our three populations: (i) a community sample of first-time mothers allocated to the control group of the NOURISH trial (mean child age=24months [SD=1]; N=244); (ii) a sample of immigrant Indian mothers of children aged 1-5years (mean age=34months [SD=14]; N=203), and (iii) a sample of immigrant Chinese mothers of children aged 1-4years (mean age=36months [SD=14]; N=216). The original 8-factor model provided an acceptable fit to the data in the NOURISH sample with minor post hoc re-specifications (two error covariances on Satiety Responsiveness and an item-factor covariance to account for a cross-loading of an item (Fussiness) on Satiety Responsiveness). The re-specified model showed reasonable fit in both the Indian and Chinese samples. Cronbach's α estimates ranged from .73 to .91 in the Australian sample and .61-.88 in the immigrant samples. This study supports the appropriateness of the CEBQ in the multicultural Australian context. PMID:23333562

  12. Seizure metaphors in children with epilepsy: A study based on a multiple-choice self-report questionnaire.

    PubMed

    D'Angelosante, Valentina; Tommasi, Marco; Casadio, Claudia; Verrotti, Alberto

    2015-05-01

    The advantages of metaphorical representation are pointed out in many fields of clinical research (e.g. cancer, HIV, psychogenic nonepileptic seizures). This study aimed at offering a novel contribution showing how children with epilepsy describe the symptomatology of their seizure experiences by means of particular kinds of cognitive metaphors. Twenty-three children with idiopathic generalized epilepsy and thirty-one healthy children were recruited for this study and interviewed with a multiple-choice questionnaire asking them to describe their epileptic seizures by means of suitable metaphors. A psychologist blinded to medical diagnosis assessed and categorized all metaphors. By considering the 89 metaphors produced by the children with epilepsy and the 147 ones by the healthy controls, Agent/Force was the primary metaphor assessed by children with epilepsy, followed by Event/Situation as the second preference. Moreover, comparing the results of the control group with those of the subjects with epilepsy, it was found that controls were oriented towards selecting exogenous forces, while subjects with epilepsy tended to select endogenous forces. In particular, children with epilepsy showed a peculiar preference for an endogenous force resembling the waggle metaphor, which is similar to the effect of a quake's shaking (earthquake or seaquake). The metaphors identified by this research are a useful resource to better understand the seizure experiences of patients with epilepsy, helping to improve clinical treatment. PMID:25934584

  13. Validity and reliability of patient reported outcomes used in Psoriasis: results from two randomized clinical trials

    PubMed Central

    Shikiar, Richard; Bresnahan, Brian W; Stone, Stephen P; Thompson, Christine; Koo, John; Revicki, Dennis A

    2003-01-01

    Background Two Phase III randomized controlled clinical trials were conducted to assess the efficacy, safety, and tolerability of weekly subcutaneous administration of efalizumab for the treatment of psoriasis. Patient reported measures of psoriasis-related functionality and health-related quality of life and of psoriasis-related symptom assessments were included as part of the trials. Objective To assess the reliability, validity, and responsiveness of the patient reported outcome measures that were used in the trials – the Dermatology Life Quality Index (DLQI), the Psoriasis Symptom Assessment (PSA) Scale, and two itch measures, a Visual Analog Scale (VAS) and the National Psoriasis Foundation (NPF) itch measure. Methods Subjects aged 18 to 70 years with moderate to severe psoriasis for at least 6 months were recruited into the two clinical trials (n = 1095). Internal consistency reliability was evaluated for all patient reported outcomes at baseline and at 12 weeks. Construct validity was evaluated by relations among the different patient reported outcomes and between the patient reported outcomes and the clinical assessments (Psoriasis Area and Severity Index; Overall Lesion Severity Scale; Physician's Global Assessment of Change) assessed at baseline and at 12 weeks, as was the change over the course of the 12 week portion of the trial. Results Internal consistency reliability ranged from 0.86 to 0.95 for the patient reported outcome measures. The patient reported outcome measures were all shown to have significant construct validity with respect to each other and with respect to the clinical assessments. The four measures also demonstrated significant responsiveness to change in underlying clinical status of the patients over the course of the trial, as measured by the independently assessed clinical outcomes. Conclusions The DLQI, the PSA, VAS, and the NPF are considered useful tools for the measurement of dermatology-related limitations of functional

  14. Electronic capture of patient-reported and clinician-reported outcome measures in an elective orthopaedic setting: a retrospective cohort analysis

    PubMed Central

    Malhotra, Karan; Buraimoh, Olatunbosun; Thornton, James; Cullen, Nicholas; Singh, Dishan; Goldberg, Andrew J

    2016-01-01

    Objectives To determine whether an entirely electronic system can be used to capture both patient-reported outcomes (electronic Patient-Reported Outcome Measures, ePROMs) as well as clinician-validated diagnostic and complexity data in an elective surgical orthopaedic outpatient setting. To examine patients' experience of this system and factors impacting their experience. Design Retrospective analysis of prospectively collected data. Setting Single centre series. Outpatient clinics at an elective foot and ankle unit in the UK. Participants All new adult patients attending elective orthopaedic outpatient clinics over a 32-month period. Interventions All patients were invited to complete ePROMs prior to attending their outpatient appointment. At their appointment, those patients who had not completed ePROMs were offered the opportunity to complete it on a tablet device with technical support. Matched diagnostic and complexity data were captured by the treating consultant during the appointment. Outcome measures Capture rates of patient-reported and clinician-reported data. All information and technology (IT) failures, language and disability barriers were captured. Patients were asked to rate their experience of using ePROMs. The scoring systems used included EQ-5D-5L, the Manchester-Oxford Foot Questionnaire (MOxFQ) and the Visual Analogue Scale (VAS) pain score. Results Out of 2534 new patients, 2176 (85.9%) completed ePROMs, of whom 1090 (50.09%) completed ePROMs at home/work prior to their appointment. 31.5% used a mobile (smartphone/tablet) device. Clinician-reported data were captured on 2491 patients (98.3%). The mean patient experience score of using Patient-Reported Outcome Measures (PROMs) was 8.55±1.85 out of 10 and 666 patients (30.61%) left comments. Of patients leaving comments, 214 (32.13%) felt ePROMs did not adequately capture their symptoms and these patients had significantly lower patient experience scores (p<0.001). Conclusions This study

  15. The role of expectations in patients' reports of post-operative outcomes and improvement following therapy.

    PubMed

    Flood, A B; Lorence, D P; Ding, J; McPherson, K; Black, N A

    1993-11-01

    Outcomes research typically focuses on the technical capabilities associated with treatment that predicts patients' post-therapy outcomes adjusting for health-related factors. Research on the ability of placebo therapy to alter outcomes suggests that a patient's expectations about therapy can also influence outcomes. Few studies have examined the effects of expectations and their implications for assessing outcomes. This study followed 348 patients who had surgery for benign prostatic hyperplasia. Four hypotheses are tested: whether positive expectations about improvement influence: 1) patients' postoperative reports of symptoms; 2) their belief that they have improved; 3) their overall health after treatment; and 4) whether these effects persist during the year following treatment. Using step-wise regression to control for sociodemographic and clinical factors, we found positive expectations did not appear to strongly influence a patient's report of postoperative symptoms or their overall health. However, we found strong support for positive expectations increasing the likelihood of reporting they felt better after surgery, even after controlling for symptom changes. This effect persisted throughout the postoperative year. We conclude that positive expectations result in a more optimistic view of improvement after surgery rather than altering reports of outcomes or health. PMID:7694013

  16. A multisite validity study of self-reported anesthesia outcomes.

    PubMed

    Walker, Peter; Pekmezaris, Renee; Lesser, Martin L; Nouryan, Christian N; Rosinia, Frank; Pratt, Kathy; LaVopa, Catherine

    2012-01-01

    The purpose of this study was to assess the validity of a multisite anesthesia voluntary adverse event reporting process. A data validation methodology was used through medical chart review on live records at 3 facilities (N = 600). The per-item aggregated error rate among all 42 data items was 0.3%: 0.1% for quality indicators, 1.3% for demographic/status variables, and 1.7% for administrative items. The per-patient error rate among all 42 data items was 6.3%: 3.0% for quality indicators, 1.7% for demographic/status variables, and 3.0% for administrative items. Trends such as better accuracy for more serious events continue, but observed error rates were lower than those found in previous surveys-an indication that, while further study is needed, nonpunitive voluntary reporting may reduce errors in anesthesia care. PMID:22326979

  17. Feasibility and Value of PatientViewpoint: A Web System for Patient-Reported Outcomes Assessment in Clinical Practice

    PubMed Central

    Snyder, Claire F.; Blackford, Amanda L.; Wolff, Antonio C.; Carducci, Michael A.; Herman, Joseph M.; Wu, Albert W.

    2012-01-01

    OBJECTIVE The PatientViewpoint website collects patient-reported outcomes (PROs) and links them with the electronic health record to aid patient management. This pilot-test evaluated PatientViewpoint’s use, usefulness, and acceptability to patients and clinicians. METHODS This was a single-arm prospective study that enrolled breast and prostate cancer patients undergoing treatment and the clinicians who managed them. Patients completed PROs every two weeks, and clinicians could access the results for patient visits. Scores that were poor relative to norms or substantially worse than the previous assessment were highlighted. After three on-study visits, we assessed patient and clinician perspectives on PatientViewpoint using close-ended and open-ended questions. RESULTS 11/12 eligible clinicians (92%) and 52/76 eligible patients (68%) enrolled. Patients completed a median of 71% of assigned questionnaires; clinicians reported using the information for 79% of patients, most commonly as a source of additional information (51%). At the median, score reports identified 3 potential issues, of which 1 was discussed during the visit. Patients reported the system was easy to use (92%), useful (70%), aided recall of symptoms/side effects (72%), helped them feel more in control of their care (60%), improved discussions with their provider (49%), and improved care quality (39%). Patients and clinicians desired more information on score interpretation and minor adjustments to site navigation. CONCLUSIONS These results support the feasibility and value of PatientViewpoint. An ongoing study is using a continuous quality improvement approach to further refine PatientViewpoint. Future studies will evaluate its impact on patient care and outcomes. PMID:22544513

  18. The Survey Questionnaire

    ERIC Educational Resources Information Center

    Ritter, Lois A. Ed.; Sue, Valerie M., Ed.

    2007-01-01

    Internet-based surveys are still relatively new, and researchers are just beginning to articulate best practices for questionnaire design. Online questionnaire design has generally been guided by the principles applying to other self-administered instruments, such as paper-based questionnaires. Web-based questionnaires, however, have the potential…

  19. Recommendations for Reporting Independent Variables in Outcome Studies of Early and Intensive Behavioral Intervention for Autism

    ERIC Educational Resources Information Center

    Lechago, Sarah A.; Carr, James E.

    2008-01-01

    Early and intensive behavioral intervention (EIBI) has been established as an effective treatment for autism. However, the complexity and intensity of EIBI programs make it difficult to fully report all critical aspects of the independent variable. Consequently, scientific reports of EIBI outcomes have been criticized for providing less than…

  20. Vietnamese Amerasian Resettlement. Education, Employment, and Family Outcomes in the United States. Report to Congressional Requesters.

    ERIC Educational Resources Information Center

    General Accounting Office, Washington, DC. Program Evaluation and Methodology Div.

    This report assesses both the process and outcomes of resettling Vietnamese Amerasians in the United States, particularly in the areas of education, employment, housing, and health care. The report also examines the factors that have been helpful or harmful to the successful resettlement of Amerasians. Findings show that, despite many networks and…

  1. Developing a National Outcome Reporting System for the Adult Education Program.

    ERIC Educational Resources Information Center

    Condelli, Larry; Kutner, Mark

    This document was developed to help adult education stakeholders involved in efforts to develop/test/implement a national reporting system of outcome measures documenting students' performance in the federally funded adult education program. The report reviews existing/planned accountability systems, examines major issues involved in developing an…

  2. The quiet revolution: reporting of health outcomes in general medical journals.

    PubMed

    Seymour, J; Newell, D; Shiell, A

    1997-01-01

    This study reviews the extent of evaluation of health outcomes in three general medical journals over the past decade by examining papers published in the original research section of the New England Journal of Medicine (NEJM), The Lancet, and the Medical Journal of Australia (MJA) in 1982 and 1992. Evaluations were identified and classified according to the type of comparison group and the type of outcome measures employed. They were divided into three categories: those employing a comparison group; those employing a before-and-after study design (or own comparison group); and those with no comparison group. The categories of outcome measures were mortality, clinical or intermediate measures of health state, and final outcome measures (quality of life). Results show that the proportion of papers evaluating a health services intervention remained stable over the period. However, the MJA published considerably fewer evaluations than the other journals. In the NEJM and The Lancet, 75 per cent of evaluations incorporated comparison groups, in the MJA, less than 40 per cent. Overall, the proportion of papers reporting final outcome measures increased significantly between 1982 and 1992 (p = 0.04) but the change in each journal individually did not reach statistical significance. This study indicates that the reporting of health outcomes evaluations has remained constant but there has been some change in the use of comparison groups and final outcome measures over time. PMID:10165947

  3. Parent- and child-reported parenting. Associations with child weight-related outcomes.

    PubMed

    Taylor, Amanda; Wilson, Carlene; Slater, Amy; Mohr, Philip

    2011-12-01

    The present study aimed to investigate associations of both parent-reported and child-perceived parenting styles and parent-reported parenting practices with child weight and weight-related behaviours. Participants were 175 children (56% female) aged between 7 and 11, and their primary caregivers (91% female), recruited through South Australian primary schools. Children completed measures of parenting style, attitude toward fruit, vegetables, and non-core food, and attraction to physical activity. Parents completed measures of parenting style and domain-specific parenting practices (feeding and activity-related practices) and reported on child dietary intake, physical activity, and sedentary behaviour. Objective height and weight measurements were taken from children, from which body mass index (BMI) was calculated. Child-reported parenting style and parent-reported parenting practices were uniquely associated with child weight-related outcomes, but styles and practices did not interact in their association with child outcomes. Child-reported parenting style was associated with child food and activity attitudes, whereas parent-reported parenting style was not associated with child outcomes. The findings of the present study generally support the recommendation of a parenting style high in demandingness and responsiveness for supporting healthy child weight-related behaviours, along with appropriate domain-specific practices. The child's perspective should be incorporated into research involving child outcomes wherever possible. PMID:21896297

  4. Residual Effects of Sleep Medications Are Commonly Reported and Associated with Impaired Patient-Reported Outcomes among Insomnia Patients in the United States.

    PubMed

    Fitzgerald, Timothy; Vietri, Jeffrey

    2015-01-01

    Study Objective. To measure the association of symptoms attributed to residual effects of sleep medication (e.g., drowsiness, difficulty concentrating, and impaired memory) on self-reported functioning and satisfaction with these medications. Methods. Individuals using prescription medications for insomnia were invited to complete an Internet-based survey. Respondents were compared according to the presence of self-reported residual effects; relationships between severity of these effects and outcomes were modeled using regression. Measures included the Brief Insomnia Questionnaire, Work Productivity and Activity Impairment Questionnaire, and SATMED-Q. Subgroup analyses were conducted with patients aged ≥65 years. Approximately 80% reported experiencing ≥1 residual effect. The severity of residual effects was associated with increased residual effect-related work impairment, including absenteeism (RR = 1.46, p < 0.001), presenteeism (RR = 1.12, p < 0.001), overall work impairment (RR = 1.13, p < 0.001), and nonwork activity impairment (RR = 1.11, p < 0.001). More severe residual symptoms were also associated with increased difficulty in home management (Beta = .31, p < 0.001), ability to work (Beta = .31, p < 0.001), social relationships, (Beta = .32, p < 0.001), close personal relationships (Beta = .30, p < 0.001), and lower medication satisfaction (Beta = -.37, p < 0.001). Conclusions. Individuals using medications for insomnia commonly experience symptoms considered as residual effects, and these symptoms are associated with greater interference of sleep-related problems at work, at home, and with social relationships. PMID:26783470

  5. Residual Effects of Sleep Medications Are Commonly Reported and Associated with Impaired Patient-Reported Outcomes among Insomnia Patients in the United States

    PubMed Central

    Fitzgerald, Timothy; Vietri, Jeffrey

    2015-01-01

    Study Objective. To measure the association of symptoms attributed to residual effects of sleep medication (e.g., drowsiness, difficulty concentrating, and impaired memory) on self-reported functioning and satisfaction with these medications. Methods. Individuals using prescription medications for insomnia were invited to complete an Internet-based survey. Respondents were compared according to the presence of self-reported residual effects; relationships between severity of these effects and outcomes were modeled using regression. Measures included the Brief Insomnia Questionnaire, Work Productivity and Activity Impairment Questionnaire, and SATMED-Q. Subgroup analyses were conducted with patients aged ≥65 years. Approximately 80% reported experiencing ≥1 residual effect. The severity of residual effects was associated with increased residual effect-related work impairment, including absenteeism (RR = 1.46, p < 0.001), presenteeism (RR = 1.12, p < 0.001), overall work impairment (RR = 1.13, p < 0.001), and nonwork activity impairment (RR = 1.11, p < 0.001). More severe residual symptoms were also associated with increased difficulty in home management (Beta = .31, p < 0.001), ability to work (Beta = .31, p < 0.001), social relationships, (Beta = .32, p < 0.001), close personal relationships (Beta = .30, p < 0.001), and lower medication satisfaction (Beta = −.37, p < 0.001). Conclusions. Individuals using medications for insomnia commonly experience symptoms considered as residual effects, and these symptoms are associated with greater interference of sleep-related problems at work, at home, and with social relationships. PMID:26783470

  6. The Promise of Patient-Reported Outcomes Measurement Information System-Turning Theory into Reality: A Uniform Approach to Patient-Reported Outcomes Across Rheumatic Diseases.

    PubMed

    Witter, James P

    2016-05-01

    PROMIS, the Patient-Reported Outcomes Measurement Information System, is opening new possibilities to explore and learn how patient (or proxy) self-report of core symptoms and health-related quality of life can meaningfully advance clinical research and patient care. PROMIS leverages Item Response Theory to agnostically assess, across diseases and conditions or clinical settings, numerous universally applicable core "domains" of health (symptoms and functioning) from the patient perspective. Importantly, PROMIS is enabling the testing and adoption of computerized adaptive testing, which holds great potential to minimize patient burden while maximizing accuracy. PMID:27133496

  7. A Report on the Relationships among the How I See Myself Questionnaire, Behavior Rating Scales and Achievement.

    ERIC Educational Resources Information Center

    Johnsen, E. P.; Tracy, D. B.

    Urban and rural third graders were studied to test the hypothesis that children's self-reported views of their ability to cope with the environment and their teacher's views of their performance patterns in adaptation and intrapersonal growth would have correlations with academic test performance. Teacher appraisals of adaptation covered…

  8. The Strengths and Difficulties Questionnaire (SDQ)--Self-Report. An Analysis of Its Structure in a Multiethnic Urban Adolescent Sample

    ERIC Educational Resources Information Center

    Richter, Jorg; Sagatun, Ase; Heyerdahl, Sonja; Oppedal, Brit; Roysamb, Espen

    2011-01-01

    Background: The SDQ is currently one of the internationally most frequently used screening instruments for child and adolescent mental health purposes. However, its structure, cross-cultural equivalence, and its applicability in ethnic minority groups is still a matter of discussion. Methods: SDQ self-report data of 5,379 ethnic Norwegian and 865…

  9. Mitigating the Problem of Unmeasured Outcomes in Quality Reports

    PubMed Central

    Glazer, Jacob; McGuire, Thomas; Normand, Sharon-Lise T.

    2009-01-01

    Quality reports or profiles of health care providers are inevitably based on only a measurable subset of the “outputs” of the organization. Hospitals, for example, are being profiled on their mortality in the cardiac area but not in some other areas where mortality does not seem to be the appropriate measure of quality. If inputs used for outputs included in the profile also affect outputs outside the scope of the profile, it can be taken into account in constructing a profile of the measured outputs. This paper presents a theory for how such a commonality in production should be taken into account in designing a profile for a hospital or other health care provider. We distinguish between “conventional” weights in a quality profile, and “optimal” weights that take into account a commonality in the production process. The basic idea is to increase the weights on discharges for which output is measured that use inputs that are important to other discharges whose outputs are not included in the profile. PMID:20490360

  10. Neurologic health outcomes and Agent Orange: Institute of Medicine report.

    PubMed

    Goetz, C G; Bolla, K I; Rogers, S M

    1994-05-01

    The National Academy of Sciences' Institute of Medicine conducted an independent scientific investigation to evaluate the strength of evidence for human health effects among veterans exposed to herbicides used in Vietnam and to suggest future research recommendations. Neurologic domains where multiple studies had been performed in military, occupational, or environmental situations were (1) cognitive and neuropsychiatric effects, (2) motor/coordination dysfunction and other central nervous system disorders, and (3) peripheral neuropathy. In all categories, no strong evidence established an association between herbicides used in Vietnam and clinical neurologic disorders. Methodologic weaknesses, long durations between exposure and assessments, and poor exposure measures limited many studies. The committee concluded that the available evidence was insufficient to determine an association between neurologic disorders and exposure to herbicides used in Vietnam. Neurotoxicologic studies available did not suggest strong biological plausibility for neurologic alterations related to herbicide exposure. Furthermore, given the large uncertainties in the epidemiologic studies reviewed and inadequate control for important confounders, the committee could not quantify a degree of risk for neurologic disorders from herbicide exposure likely to be experienced by Vietnam veterans. Although not part of the neurologic report, the risk of brain tumors was considered in the cancer analysis, and the committee concluded that there is limited/suggestive evidence of no association between exposure to herbicides and brain tumors. PMID:8190278

  11. Prostatic paracoccidioidomycosis with a fatal outcome: a case report

    PubMed Central

    2013-01-01

    Introduction Paracoccidioidomycosis is a systemic mycosis in Latin America that can affect various organs. Few case reports of paracoccidioidomycosis affecting the prostate are found in the literature. Case presentation We present the case of a 79-year-old Caucasian man with a six-month history of irritative symptoms of the prostate (urgency, frequency and nocturia) and difficulty initiating urination that progressed to urinary retention and the use of a urinary catheter. The anatomopathological analysis of the transurethral resection of the prostate revealed chronic granulomatous prostatitis of fungal etiology (paracoccidioidomycosis) with extensive necrosis. The patient began treatment with itraconazole at a dose of 100mg/day for six months. Radiography of the thorax revealed bilaterally diffuse nodular reticular interstitial lesions. The patient progressed to respiratory failure and was sent to the intensive care unit, but suffered a cardiopulmonary arrest and was pronounced dead. Conclusions Due to the high incidence of paracoccidioidomycosis in countries like Brazil, urologists should suspect blastomycosis in all patients with symptoms of lower urinary obstruction with chronic abacterial prostatitis. Considering that paracoccidioidomycosis has the potential to affect various organs, following diagnosis, the treatment must be initiated as soon as possible. PMID:23668825

  12. Reporting of radiographic methods in randomised controlled trials assessing structural outcomes in rheumatoid arthritis

    PubMed Central

    Baron, Gabriel; Boutron, Isabelle; Giraudeau, Bruno; Ravaud, Philippe

    2007-01-01

    Background Because an increasing number of clinical trials evaluating disease‐modifying antirheumatic drugs in rheumatoid arthritis (RA) emphasise radiographic outcomes as a primary outcome, using a reproducible radiographic measure should be placed at a premium. Aim To evaluate the reporting of radiographic methods in randomised trials assessing radiographic outcomes in RA. Methods Medline was searched for randomised controlled trials assessing radiographic outcomes published between January 1994 and December 2005 in general medical and specialty journals with a high impact factor. One reader extracted data (radiographic acquisition, assessment and reproducibility) using a standardised form. Results A total of 46 reports were included in the analysis. The mean (SD) methodological quality scores on the Jadad scale (range 0–5) and the Delphi list (0–9) were 2.9 (1.2) and 6.4 (1.3), respectively. Use of a standardised procedure for the acquisition of the radiographs was reported in 2 (4.3%) articles. 2 (4.3%) reports indicated that the quality of the radiographs was evaluated. In 65.2% of the reports, ⩾2 radiographic scores were used. Reporting of radiographic assessment was well detailed for number of readers (91.3%), information on readers (71.7%), blinding (91.4%) and how films were viewed (74.0%). The reproducibility of the reading was reported in 39.1% of the articles. Conclusion The reporting of results of randomised controlled trials of radiographic outcomes in RA shows great variability in radiographic scores used. Reporting of radiographic methods could be improved upon, especially the acquisition procedure and the reproducibility of the reading. PMID:17158823

  13. Analyzing clinical trial outcomes based on incomplete daily diary reports.

    PubMed

    Thomas, Neal; Harel, Ofer; Little, Roderick J A

    2016-07-30

    A case study is presented assessing the impact of missing data on the analysis of daily diary data from a study evaluating the effect of a drug for the treatment of insomnia. The primary analysis averaged daily diary values for each patient into a weekly variable. Following the commonly used approach, missing daily values within a week were ignored provided there was a minimum number of diary reports (i.e., at least 4). A longitudinal model was then fit with treatment, time, and patient-specific effects. A treatment effect at a pre-specified landmark time was obtained from the model. Weekly values following dropout were regarded as missing, but intermittent daily missing values were obscured. Graphical summaries and tables are presented to characterize the complex missing data patterns. We use multiple imputation for daily diary data to create completed data sets so that exactly 7 daily diary values contribute to each weekly patient average. Standard analysis methods are then applied for landmark analysis of the completed data sets, and the resulting estimates are combined using the standard multiple imputation approach. The observed data are subject to digit heaping and patterned responses (e.g., identical values for several consecutive days), which makes accurate modeling of the response data difficult. Sensitivity analyses under different modeling assumptions for the data were performed, along with pattern mixture models assessing the sensitivity to the missing at random assumption. The emphasis is on graphical displays and computational methods that can be implemented with general-purpose software. Copyright © 2016 John Wiley & Sons, Ltd. PMID:26888661

  14. Patient-reported Outcomes in Asian Patients With Chronic Hepatitis C Treated With Ledipasvir and Sofosbuvir

    PubMed Central

    Younossi, Zobair M.; Stepanova, Maria; Chan, Henry L.Y.; Lee, Mei H.; Yu, Ming-Lung; Dan, Yock Y.; Choi, Moon S.; Henry, Linda

    2016-01-01

    Abstract Prevalence of chronic hepatitis C (CH-C) infection in patients of Asian ancestry ranges between 1% and 20%. Interferon (IFN)- and ribavirin (RBV)-containing regimens for CH-C have a negative impact on patient-reported outcomes (PROs) during treatment. The aim of this study was to assess the impact of IFN-free RBV-free sofosbuvir (SOF)-based regimens on PROs in CH-C patients of Asian ancestry. In this observational retrospective study, the PRO data from 12 multicenter multinational phase 3 clinical trials (2012–2015, conducted in Europe, North America, Australia, and New Zealand) of SOF-based regimens with and without IFN, ledipasvir (LDV), and/or RBV were used. At baseline, during treatment, and post-treatment, patients completed 4 validated PRO questionnaires (SF-36, CLDQ-HCV, FACIT-F, and WPAI:SHP). The resulting PROs in Asian patients were compared across the treatment regimens. Of 4485 of the trials’ participants, 106 patients were of Asian ancestry (55.7% male, 69.8% treatment-naïve, 17.0% cirrhotic). In comparison with other patients, the Asian CH-C cohort was younger, had lower BMI, and lower rates of pre-treatment psychiatric comorbidities (anxiety, depression, sleep disorders) (all P < .05). At baseline, Asian patients also had lower SF-36 physical functioning scores (on average, by −5.6% on a normalized 0–100% PRO scale, P = .001). During treatment, Asian CH-C patients experienced a decline in their PRO scores while receiving IFN and/or RBV-containing regimens (up to −19.6%, P < .001). In contrast, patients receiving LDV/SOF experienced no PRO decrement and improvement of some PRO scores during treatment (+9.0% in general health of SF-36, P = .03). After achieving SVR-12, some of the PRO scores in Asian patients improved regardless of the regimen (up to +9.3%, P < .001). In multivariate analysis of Asian patients, the use of LDV/SOF was independently associated with higher PRO scores during and soon after the end of

  15. Patient-reported Outcomes in Asian Patients With Chronic Hepatitis C Treated With Ledipasvir and Sofosbuvir.

    PubMed

    Younossi, Zobair M; Stepanova, Maria; Chan, Henry L Y; Lee, Mei H; Yu, Ming-Lung; Dan, Yock Y; Choi, Moon S; Henry, Linda

    2016-03-01

    Prevalence of chronic hepatitis C (CH-C) infection in patients of Asian ancestry ranges between 1% and 20%. Interferon (IFN)- and ribavirin (RBV)-containing regimens for CH-C have a negative impact on patient-reported outcomes (PROs) during treatment.The aim of this study was to assess the impact of IFN-free RBV-free sofosbuvir (SOF)-based regimens on PROs in CH-C patients of Asian ancestry.In this observational retrospective study, the PRO data from 12 multicenter multinational phase 3 clinical trials (2012-2015, conducted in Europe, North America, Australia, and New Zealand) of SOF-based regimens with and without IFN, ledipasvir (LDV), and/or RBV were used. At baseline, during treatment, and post-treatment, patients completed 4 validated PRO questionnaires (SF-36, CLDQ-HCV, FACIT-F, and WPAI:SHP). The resulting PROs in Asian patients were compared across the treatment regimens.Of 4485 of the trials' participants, 106 patients were of Asian ancestry (55.7% male, 69.8% treatment-naïve, 17.0% cirrhotic). In comparison with other patients, the Asian CH-C cohort was younger, had lower BMI, and lower rates of pre-treatment psychiatric comorbidities (anxiety, depression, sleep disorders) (all P < .05). At baseline, Asian patients also had lower SF-36 physical functioning scores (on average, by -5.6% on a normalized 0-100% PRO scale, P = .001). During treatment, Asian CH-C patients experienced a decline in their PRO scores while receiving IFN and/or RBV-containing regimens (up to -19.6%, P < .001). In contrast, patients receiving LDV/SOF experienced no PRO decrement and improvement of some PRO scores during treatment (+9.0% in general health of SF-36, P = .03). After achieving SVR-12, some of the PRO scores in Asian patients improved regardless of the regimen (up to +9.3%, P < .001). In multivariate analysis of Asian patients, the use of LDV/SOF was independently associated with higher PRO scores during and soon after the end of treatment (betas +15

  16. Do self-report and medical record comorbidity data predict longitudinal functional capacity and quality of life health outcomes similarly?

    PubMed Central

    2012-01-01

    Background The search for a reliable, valid and cost-effective comorbidity risk adjustment method for outcomes research continues to be a challenge. The most widely used tool, the Charlson Comorbidity Index (CCI) is limited due to frequent missing data in medical records and administrative data. Patient self-report data has the potential to be more complete but has not been widely used. The purpose of this study was to evaluate the performance of the Self-Administered Comorbidity Questionnaire (SCQ) to predict functional capacity, quality of life (QOL) health outcomes compared to CCI medical records data. Method An SCQ-score was generated from patient interview, and the CCI score was generated by medical record review for 525 patients hospitalized for Acute Coronary Syndrome (ACS) at baseline, three months and eight months post-discharge. Linear regression models assessed the extent to which there were differences in the ability of comorbidity measures to predict functional capacity (Activity Status Index [ASI] scores) and quality of life (EuroQOL 5D [EQ5D] scores). Results The CCI (R2 = 0.245; p = 0.132) did not predict quality of life scores while the SCQ self-report method (R2 = 0.265; p < 0.0005) predicted the EQ5D scores. However, the CCI was almost as good as the SCQ for predicting the ASI scores at three and six months and performed slightly better in predicting ASI at eight-month follow up (R2 = 0.370; p < 0.0005 vs. R2 = 0.358; p < 0.0005) respectively. Only age, gender, family income and Center for Epidemiologic Studies-Depression (CESD) scores showed significant association with both measures in predicting QOL and functional capacity. Conclusions Although our model R-squares were fairly low, these results show that the self-report SCQ index is a good alternative method to predict QOL health outcomes when compared to a CCI medical record score. Both measures predicted physical functioning similarly. This suggests that patient self-reported comorbidity

  17. Estimating recruitment rates for routine use of patient reported outcome measures and the impact on provider comparisons

    PubMed Central

    2014-01-01

    Background The routine use of patient reported outcome measures (PROMs) aims to compare providers as regards the clinical need of their patients and their outcome. Simple methods of estimating recruitment rates based on aggregated data may be inaccurate. Our objectives were to: use patient-level linked data to evaluate these estimates; produce revised estimates of national and providers’ recruitment rates; and explore whether or not recruitment bias exists. Methods Case study based on patients who were eligible to participate in the English National PROMs Programme for elective surgery (hip and knee replacement, groin hernia repair, varicose vein surgery) using data from pre-operative questionnaires and Hospital Episode Statistics. Data were linked to determine: the eligibility for including operations; eligibility of date of surgery; duplicate questionnaires; cancelled operations; correct assignment to provider. Influence of patient characteristics on recruitment rates were investigated. Results National recruitment rates based on aggregated data over-estimated the true rate because of the inclusion of ineligible operations (from 1.9% - 7.0% depending on operation) and operations being cancelled (1.9% - 3.6%). Estimates of national recruitment rates using inclusion criteria based on patient-level linked data were lower than those based on simple methods (eg hip replacement was 73% rather than 78%). Estimates of provider’s recruitment rates based on aggregated data were also adversely affected by attributing patients to the wrong provider (2.4% - 4.9%). Use of linked data eliminated all estimates of over 100% recruitment, though providers still showed a wide range of rates. While the principal determinant of recruitment rates was the provider, some patients’ socio-demographic characteristics had an influence on non-recruitment: non-white (Adjusted Odds Ratio 1.25-1.67, depending on operation); most deprived socio-economic group (OR 1.11-1.23); aged over 75

  18. Eating Behaviour among Multi-Ethnic Adolescents in a Middle-Income Country as Measured by the Self-Reported Children’s Eating Behaviour Questionnaire

    PubMed Central

    Loh, Debbie Ann; Moy, Foong Ming; Zaharan, Nur Lisa; Mohamed, Zahurin

    2013-01-01

    Background Escalating weight gain among the Malaysian paediatric population necessitates identifying modifiable behaviours in the obesity pathway. Objectives This study describes the adaptation and validation of the Children’s Eating Behaviour Questionnaire (CEBQ) as a self-report for adolescents, investigates gender and ethnic differences in eating behaviour and examines associations between eating behaviour and body mass index (BMI) z-scores among multi-ethnic Malaysian adolescents. Methodology This two-phase study involved validation of the Malay self-reported CEBQ in Phase 1 (n = 362). Principal Axis Factoring with Promax rotation, confirmatory factor analysis and reliability tests were performed. In Phase 2, adolescents completed the questionnaire (n = 646). Weight and height were measured. Gender and ethnic differences in eating behaviour were investigated. Associations between eating behaviour and BMI z-scores were examined with complex samples general linear model (GLM) analyses, adjusted for gender, ethnicity and maternal educational level. Results Exploratory factor analysis revealed a 35-item, 9-factor structure with ‘food fussiness’ scale split into two. In confirmatory factor analysis, a 30-item, 8-factor structure yielded an improved model fit. Reliability estimates of the eight factors were acceptable. Eating behaviours did not differ between genders. Malay adolescents reported higher Food Responsiveness, Enjoyment of Food, Emotional Overeating, Slowness in Eating, Emotional Undereating and Food Fussiness 1 scores (p<0.05) compared to Chinese and Indians. A significant negative association was observed between BMI z-scores and Food Fussiness 1 (‘dislike towards food’) when adjusted for confounders. Conclusion Although CEBQ is a valuable psychometric instrument, adjustments were required due to age and cultural differences in our sample. With the self-report, our findings present that gender, ethnic and weight status influenced eating

  19. Relationships between the Food Expectancy Questionnaire (FEQ) and the Food Frequency Questionnaire (FFQ).

    PubMed

    Reid, Marie; Bunting, Jane; Hammersley, Richard

    2005-10-01

    The outcome expectancies of 250 respondents were examined using the Food Expectancy Questionnaire (FEQ), comparing expectancies about four different foods: fruit, vegetables, chocolate and sweets and plain biscuits. These expectancies were related to diet as assessed by a Food Frequency Questionnaire. As with alcohol expectancies [Jones, B. T., Corbin, W. & Fromme, K. (2001). A review of expectancy theory and alcohol consumption. Addiction, 96, 57-72], on which this research was modelled, positive and negative outcomes were the main factors for all foods, accounting jointly for between 33 and 40% of expectancy variance in factor analysis and predicting as much as 16% of the variance in relevant food intake measures by linear regression. Expected positive and negative outcomes of eating were predominantly immediate psychological after-effects, rather than including orosensory experiences, or longer-term effects on health or well-being. Other expectancies varied from food to food. FEQ expectancies for different foods have similar factor structure and were related to self-reported diet, the FEQ therefore shows promise as a means of modelling cognitions about eating. PMID:15949872

  20. Adverse Symptom Event Reporting by Patients vs Clinicians: Relationships With Clinical Outcomes

    PubMed Central

    Jia, Xiaoyu; Heller, Glenn; Barz, Allison; Sit, Laura; Fruscione, Michael; Appawu, Mark; Iasonos, Alexia; Atkinson, Thomas; Goldfarb, Shari; Culkin, Ann; Kris, Mark G.; Schrag, Deborah

    2009-01-01

    Background In cancer treatment trials, the standard source of adverse symptom data is clinician reporting by use of items from the National Cancer Institute’s Common Terminology Criteria for Adverse Events (CTCAE). Patient self-reporting has been proposed as an additional data source, but the implications of such a shift are not understood. Methods Patients with lung cancer receiving chemotherapy and their clinicians independently reported six CTCAE symptoms and Karnofsky Performance Status longitudinally at sequential office visits. To compare how patient's vs clinician's reports relate to sentinel clinical events, a time-dependent Cox regression model was used to measure associations between reaching particular CTCAE grade severity thresholds with the risk of death and emergency room visits. To measure concordance of CTCAE reports with indices of daily health status, Kendall tau rank correlation coefficients were calculated for each symptom with EuroQoL EQ-5D questionnaire and global question scores. Statistical tests were two-sided. Results A total of 163 patients were enrolled for an average of 12 months (range = 1–28 months), with a mean of 11 visits and 67 (41%) deaths. CTCAE reports were submitted by clinicians at 95% of visits and by patients at 80% of visits. Patients generally reported symptoms earlier and more frequently than clinicians. Statistically significant associations with death and emergency room admissions were seen for clinician reports of fatigue (P < .001), nausea (P = .01), constipation (P = .038), and Karnofsky Performance Status (P < .001) but not for patient reports of these items. Higher concordance with EuroQoL EQ-5D questionnaire and global question scores was observed for patient-reported symptoms than for clinician-reported symptoms. Conclusions Longitudinally collected clinician CTCAE assessments better predict unfavorable clinical events, whereas patient reports better reflect daily health status. These perspectives are

  1. Poor patient-reported outcome after hip replacement, related to poor perception of perioperative information, commoner in immigrants than in non-immigrants.

    PubMed

    Krupic, Ferid; Rolfson, Ola; Nemes, Szilard; Kärrholm, Johan

    2016-06-01

    Background and purpose - In preparing patients for total hip replacement surgery, providing thorough information helps to reduce anxiety, manage postoperative pain, prevent complications, and better engage patients in their rehabilitation. However, patient characteristics may have an influence on the ability to comprehend and assimilate the information given. We investigated differences in patients born in Sweden and those born outside Sweden regarding how they perceived the information given before THR, and if this was associated with different patient-reported outcomes one year after surgery. Patients and methods - From Sahlgrenska University Hospital, we recruited 150 patients born in Sweden and 50 patients born outside Sweden who were to undergo THR. We retrieved routinely collected data from the Swedish Hip Arthroplasty Register including basic demographic variables and patient-reported outcome measures, both preoperatively and at 1-year follow-up. In a separate survey carried out 1-2 weeks after surgery, patients were asked about the information provided in connection with the operation. Results - Patients born outside Sweden more frequently reported that they were poorly informed about possibilities to treat pain and about the operation itself. 1 year after the operation, patients born outside Sweden who, 1-2 weeks after the operation, had reported that they were poorly informed also reported having worse outcomes. Poorer results were found for the questions self-care and anxiety/depression in the EQ-5D questionnaire, pain on a visual analog scale (VAS), EQVAS, and EQ-5D index compared to those patients born in Sweden who had received at least some information of acceptable quality. Interpretation - One quarter of the patients were not satisfied with the information provided before and after THR. These patients more commonly reported perioperative anxiety and they were more often born outside Sweden. Poorly informed patients who had come from countries

  2. Poor patient-reported outcome after hip replacement, related to poor perception of perioperative information, commoner in immigrants than in non-immigrants

    PubMed Central

    Krupic, Ferid; Rolfson, Ola; Nemes, Szilard; Kärrholm, Johan

    2016-01-01

    Background and purpose In preparing patients for total hip replacement surgery, providing thorough information helps to reduce anxiety, manage postoperative pain, prevent complications, and better engage patients in their rehabilitation. However, patient characteristics may have an influence on the ability to comprehend and assimilate the information given. We investigated differences in patients born in Sweden and those born outside Sweden regarding how they perceived the information given before THR, and if this was associated with different patient-reported outcomes one year after surgery. Patients and methods From Sahlgrenska University Hospital, we recruited 150 patients born in Sweden and 50 patients born outside Sweden who were to undergo THR. We retrieved routinely collected data from the Swedish Hip Arthroplasty Register including basic demographic variables and patient-reported outcome measures, both preoperatively and at 1-year follow-up. In a separate survey carried out 1–2 weeks after surgery, patients were asked about the information provided in connection with the operation. Results Patients born outside Sweden more frequently reported that they were poorly informed about possibilities to treat pain and about the operation itself. 1 year after the operation, patients born outside Sweden who, 1–2 weeks after the operation, had reported that they were poorly informed also reported having worse outcomes. Poorer results were found for the questions self-care and anxiety/depression in the EQ-5D questionnaire, pain on a visual analog scale (VAS), EQVAS, and EQ-5D index compared to those patients born in Sweden who had received at least some information of acceptable quality. Interpretation One quarter of the patients were not satisfied with the information provided before and after THR. These patients more commonly reported perioperative anxiety and they were more often born outside Sweden. Poorly informed patients who had come from countries outside

  3. Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic.

    PubMed

    Gilbert, Alexandra; Sebag-Montefiore, David; Davidson, Susan; Velikova, Galina

    2015-03-01

    There is increasing interest in the use of patient-reported outcomes (PROs) in routine practice in cancer care to measure symptoms and health related quality of life (HRQOL). PROs are designed to capture the patient's perspective of their care and treatment, and complement the traditional clinical outcomes of survival and toxicity assessment. Integrating routine collection and feedback of PROs has been found to improve care for patients on both an individual level, through improved communication and management of symptoms, and at an organizational level, by enabling aggregation of data to compare performance. This article reviews the benefits and challenges of introducing patient-reported assessments into routine clinical practice. Methods for choosing a questionnaire; collection and presentation of results; timing and frequency of administration as well as clinician training methods to aid the ability of clinicians to integrate the use of PROs into their own practice are described. Electronic PRO capture and integration with electronic health records seems to provide the most effective method for seamless integration into existing patient care pathways. Case studies from our own practice illustrate the issues raised. Electronic methods enabling immediate collection, scoring and interpretation of the data, as well as real-time data capture, email alert systems and individualized, online self-management advice may enable severe symptoms to be managed in a more timely manner. Evaluation methods are described to establish the effectiveness of the PRO intervention. Engaging stakeholders throughout the process of initial consultation and development, during delivery and evaluation is key to success. Future work needs to focus on the effectiveness of PROs in longer-term follow-up of patients in routine care and the relationship between the PRO severity grading and clinician severity grading using the Common Terminology Criteria of Adverse Events (CTCAE). PMID:25448486

  4. Conversion of Questionnaire Data

    SciTech Connect

    Powell, Danny H; Elwood Jr, Robert H

    2011-01-01

    During the survey, respondents are asked to provide qualitative answers (well, adequate, needs improvement) on how well material control and accountability (MC&A) functions are being performed. These responses can be used to develop failure probabilities for basic events performed during routine operation of the MC&A systems. The failure frequencies for individual events may be used to estimate total system effectiveness using a fault tree in a probabilistic risk analysis (PRA). Numeric risk values are required for the PRA fault tree calculations that are performed to evaluate system effectiveness. So, the performance ratings in the questionnaire must be converted to relative risk values for all of the basic MC&A tasks performed in the facility. If a specific material protection, control, and accountability (MPC&A) task is being performed at the 'perfect' level, the task is considered to have a near zero risk of failure. If the task is performed at a less than perfect level, the deficiency in performance represents some risk of failure for the event. As the degree of deficiency in performance increases, the risk of failure increases. If a task that should be performed is not being performed, that task is in a state of failure. The failure probabilities of all basic events contribute to the total system risk. Conversion of questionnaire MPC&A system performance data to numeric values is a separate function from the process of completing the questionnaire. When specific questions in the questionnaire are answered, the focus is on correctly assessing and reporting, in an adjectival manner, the actual performance of the related MC&A function. Prior to conversion, consideration should not be given to the numeric value that will be assigned during the conversion process. In the conversion process, adjectival responses to questions on system performance are quantified based on a log normal scale typically used in human error analysis (see A.D. Swain and H.E. Guttmann

  5. Neuropsychiatric questionnaires in systemic lupus erythematosus.

    PubMed

    Tani, C; Palagini, L; Moraes-Fontes, M F; Carli, L; Mauri, M; Bombardieri, S; Mosca, M

    2014-01-01

    Patients with systemic lupus erythematosus (SLE) can be affected by a multitude of neurologic and psychiatric symptoms with a wide range of prevalence and severity. Irrespectively from attribution to SLE or other causes, neuropsychiatric (NP) symptoms strongly impact short-term and long-term outcomes, thus NP evaluation during routine clinical practice in SLE should be undertaken regularly. The assessment of NP involvement in SLE patients is challenging and the available diagnostic tools fail to guarantee optimal diagnostic accuracy, sensitivity to changes as well as feasibility in routine clinical care. Standardised questionnaires (both physician-administered and self-reported) can offer valuable help to the treating physician to capture all possible NP syndromes; few SLE-specific NP questionnaire have been developed but validation in large cohort or cross-cultural adaptations are still pending. On the other hand, general instruments have been largely applied to SLE patients. Both kinds of questionnaires can address all possible NP manifestations either globally or, more frequently, focus on specific NP symptoms. These latter have been mainly used in SLE to detect and classify mild and subtle symptoms, more likely to be overlooked during routine clinical assessment such as headache, cognitive impairment and psychiatric manifestations. In conclusion, this literature review highlights a clear case for validation studies in this area and the wider implementation of questionnaires to assess NP involvement is still warranted. The broader use of such instruments could have important consequences; first of all, by standardising symptom assessment, a better definition of the prevalence of NP manifestation across different centres could be achieved. Secondly, prospective studies could allow for the evaluation of clinical significance of mild symptoms and their impact on the patient's function and quality of life. PMID:25365091

  6. Mother Reports of Maternal Support Following Child Sexual Abuse: Preliminary Psychometric Data on the Maternal Self-Report Support Questionnaire (MSSQ)

    ERIC Educational Resources Information Center

    Smith, Daniel W.; Sawyer, Genelle K.; Jones, Lisa M.; Cross, Theodore; McCart, Michael R.; Ralston, M. Elizabeth

    2010-01-01

    Objective: Maternal support is an important factor in predicting outcomes following disclosure of child sexual abuse; however, definition of the construct has been unclear and existing measures of maternal support are utilized inconsistently and have limited psychometric data. The purpose of this study was to develop a reliable and valid…

  7. The natural history of untreated dorsal wrist ganglia and patient reported outcome 6 years after intervention.

    PubMed

    Dias, J J; Dhukaram, V; Kumar, P

    2007-10-01

    We have evaluated the long-term outcome of excision, aspiration and no treatment of dorsal wrist ganglia prospectively in 236 (83%) of 283 patients who responded to a postal questionnaire at a mean of 70 months. The resolution of symptoms was similar between the treatment groups (p>0.3). Pain and unsightliness improved in all three treatment groups. The prevalence of weakness and stiffness altered only slightly in all three treatment groups. More patients with a recurrent, or persistent ganglion complained of pain, stiffness and unsightliness (p<0.0001). Patient satisfaction was higher after surgical excision (p<0.0001), even if the ganglion recurred. Twenty-three of 55 (58%) untreated ganglia resolved spontaneously. The recurrence rate was 58% (45/78) and 39% (40/103) following aspiration and excision, respectively. Eight out of 103 patients had complications following surgery. In this study, neither excision nor aspiration provided significant long-term benefit over no treatment. PMID:17950209

  8. Educational Funding and Student Outcomes: The Relationship as Evidenced by State-Level Data. Research Reports

    ERIC Educational Resources Information Center

    Carter, Ted

    2014-01-01

    This report shows the impact of various school funding measures on student outcomes measured by NAEP, ACT, and SAT scores, the four-year cohort graduation rate, and percent of the population ages 18-24 with at least a high school diploma. State-level data for the United States from 2005 through 2014 as available is utilized to establish the nature…

  9. Student Outcomes in Developmental Education, 1994-95 through 1999-2000. Preliminary Report.

    ERIC Educational Resources Information Center

    Germanna Community Coll., Locust Grove, VA.

    This report documents student outcomes in developmental English and mathematics courses at Germanna Community College (Virginia) for the academic years 1994-95 through 1999-2000. It provides data to answer three questions: What proportion of students enroll in developmental courses? What is the success rate for students enrolled in developmental…

  10. Mental Health and Functional Outcomes of Maternal and Adolescent Reports of Adolescent Depressive Symptoms

    ERIC Educational Resources Information Center

    Rice, Frances; Lifford, Kate J.; Thomas, Hollie V.; Thapar, Anita

    2007-01-01

    Objective: To assess the value of maternal and self-ratings of adolescent depression by investigating the extent to which these reports predicted a range of mental health and functional outcomes 4 years later. The potential influence of mother's own depressed mood on her ratings of adolescent depression and suicidal ideation on adolescent outcome…

  11. Exploring Outcomes and Initial Self-Report of Client Motivation in a College Counseling Center

    ERIC Educational Resources Information Center

    Ilagan, Guy; Vinson, Michael L.; Sharp, Julia L.; Ilagan, Jill; Oberman, Aaron

    2015-01-01

    Objective: To explore the association between college counseling center clients' initial self-report of motivation and counseling outcome. Participants: The sample was composed of 331 student clients who utilized a college counseling center from August 2007 to August 2009. The college is a public, mid-size, urban university in the Southeast.…

  12. USE OF CASE REPORTS IN ASSESSING ADVERSE OUTCOMES OF HUMAN PRENATAL DRUG EXPOSURES: AN APPROACH

    EPA Science Inventory

    The use of case reports for assessing the developmental consequences of prenatal drug exposure is limited by the inability to determine the incidence of adverse outcomes and by the high likelihood for bias. Yet, because it is impossible to conduct clinical trials for the assessme...

  13. Student Self-Reported Learning Outcomes of Field Trips: The Pedagogical Impact

    ERIC Educational Resources Information Center

    Alon, Nirit Lavie; Tal, Tali

    2015-01-01

    In this study, we used the classification and regression trees (CART) method to draw relationships between student self-reported learning outcomes in 26 field trips to natural environments and various characteristics of the field trip that include variables associated with preparation and pedagogy. We wished to examine the extent to which the…

  14. State estimation issues: External system modeling enhancements. Volume 2: Summary of responses to utility and EMS supplier survey questionnaire; Final report

    SciTech Connect

    Rahimi, A.F.; Kato, K.; Stadlin, W.; Ansari, S.H. |; Brandwajn, V.; Bose, A.

    1995-04-01

    The single largest source of error in state estimation, an inadequate external system model, affects the usefulness of energy management system (EMS) applications. EPRI has developed comprehensive guidelines to help utilities enhance external system modeling for state estimation and has demonstrated use of the guidelines on three host utility systems without data exchange. These guidelines address network topology, analog measurement, inter-utility data exchange, and application procedures and recommendations. They include specific guidelines for utility types and network analysis applications, and validate the Normalized Level of Impact (NLI) as a key index for external system modeling. This report provides valuable insight to the veteran, as well as first-time state estimator implementors and users. A useful reference source, the extensive guidelines supply answers and helpful advice, as well as recommendations for future work. Volume 1 contains external system modeling guidelines, and Volume 2 is a summary of responses to the utility and EMS supplier survey questionnaire used in this project.

  15. Programmatic assessment of a university-based implant training program using patient-reported outcomes.

    PubMed

    Al-Sabbagh, Mohanad; Jenkins, Diane W; de Leeuw, Reny; Nihill, Patricia; Robinson, Fonda G; Thomas, Mark V

    2014-11-01

    The University of Kentucky College of Dentistry (UKCD) established an implant training program that provides training in the use of a single implant system, evidence-based diagnostic and treatment protocols (standardized work practices), and a total quality management system (Implant Quality Assurance Program). The aim of this study was to assess the programmatic effectiveness of the UKCD implant training program by reporting the success and survival of implants placed, using patient-reported outcomes and comparing them to previously established benchmarks. A total of 415 patients (963 implants) were interviewed, approximately 50 percent of all qualified patients. The implant survival rate was 97 percent, and 88 percent of the implants were considered successful (as determined by patient-centric criteria). These outcomes were consistent with the program's previously established benchmarks of 90 percent. These results suggest that work standardization (in the form of specific treatment protocols) and the use of a formal, incremental learning system can result in positive patient outcomes. Clinical outcomes should be monitored in academic dental settings as part of clinical process improvement, and these outcomes can provide a means of assessing the effectiveness of the training program. PMID:25362695

  16. Relationship between clinical and patient-reported outcomes in a phase 3 trial of tofacitinib or MTX in MTX-naïve patients with rheumatoid arthritis

    PubMed Central

    Fleischmann, Roy; Strand, Vibeke; Wilkinson, Bethanie; Kwok, Kenneth; Bananis, Eustratios

    2016-01-01

    Objective To compare the relationship between clinical measures and patient-reported outcomes (PROs) in patients with rheumatoid arthritis (RA) treated with tofacitinib or methotrexate (MTX). Methods In a phase 3 randomised controlled trial, patients (N=956) who were MTX-naïve or had received ≤3 doses were randomised and received tofacitinib 5 or 10 mg twice daily or MTX titrated to 20 mg/week. Outcomes included: per cent of patients achieving American College of Rheumatology 70% responses (ACR70), ACR50, low disease activity (LDA) by Simplified Disease Activity Index (SDAI ≤11) and Clinical Disease Activity Index (CDAI ≤10), remission by SDAI (≤3.3) and CDAI (≤2.8), patient-reported Health Assessment Questionnaire-Disability Index (HAQ-DI scores <0.5), pain and global assessment of disease activity. Results At month 6, most patients who achieved LDA/remission by one definition achieved LDA/remission with others; however, discordance between measures was greater with MTX than with tofacitinib. As expected, concordance between CDAI and SDAI responses was high. Overall, patients achieving LDA or ACR50 responses reported less improvement in PROs (HAQ-DI, pain and patient global assessment) compared with clinical measures (tender and swollen joint counts). Conclusions Variability in levels of responses between clinical outcomes and PROs should be considered when setting treat-to-target goals in patients with RA. Trial registration number NCT01039688; Post-results. PMID:27175296

  17. Quality of outcome reporting in phase II studies in pulmonary tuberculosis.

    PubMed

    Bonnett, Laura Jayne; Davies, Geraint Rhys

    2015-01-01

    Tuberculosis (TB) remains a major killer amongst the infectious diseases. Current treatment involves a four-drug regimen for at least 6 months. New drugs and regimens are required to shorten treatment duration, reduce toxicity and combat drug resistance, but the optimal methodology to define the critical path for novel regimens is not well defined. We undertook a systematic review to summarise outcomes reported in Phase II trials of patients with newly diagnosed pulmonary TB to assess the need for a core outcome set. A systematic search of databases (PubMed, MEDLINE, EMBASE and LILACs) was conducted on 1 May 2015 to retrieve relevant peer-reviewed articles. Reference lists of included studies were also searched. This systematic review considered all reported outcomes. Risk of bias was considered via sequence generation, allocation concealment, blinding, reasons for exclusions, and selective reporting. Of 55 included studies, 20 were Phase IIB studies based on culture conversion, 32 were Phase IIA studies based on quantitative bacteriology, and three considered alternative outcomes. Large variation in reported outcomes and trial characteristics was observed across the included studies. Bacteriological results were as often expressed in terms of positivity as negativity, with varying definitions of culture conversion. Variation in reporting was particularly marked for Phase IIA studies, where multiple time intervals were typically selected for analysis and sometimes resulted in differing interpretations of the efficacy of drugs or regimens. Within both Phase IIA and IIB studies, there was variation in the time points at which the study participants were sampled, as well as in the bacteriological media and methods used. For successful future meta-analysis of early-phase studies, the findings of this review suggest that development of a core outcome set would be desirable. This would enable trial results to be more easily compared and combined, potentially leading to

  18. Good outcome after posterior reversible encephalopathy syndrome (PRES) despite elevated cerebral lactate: a case report

    PubMed Central

    Kondziella, Daniel; Danielsen, Else R; Thomsen, Carsten

    2015-01-01

    Posterior reversible encephalopathy syndrome (PRES) may cause irreversible brain damage. The diagnosis is confirmed by magnetic resonance imaging (MRI), where vasogenic edema may be seen especially in the posterior parts of the brain. MR spectroscopy (MRS) may be included to help predict the outcome by measuring selected metabolites for instance lactate. Usually lactate is immeasurable in brain tissue, but elevates in cases of hypoxia, and it has been associated with poor outcome. We report a case of a patient with eclampsia and PRES, who had elevated lactate initially, but complete remission clinically and on MRI. PMID:26331088

  19. [Health-related quality of life instruments and other patient-reported outcomes].

    PubMed

    Valderas, José María; Ferrer, Montse; Alonso, Jordi

    2005-12-01

    In the last few years, many different instruments assessing health-related quality of life and the broader concept of Patient-Reported Outcomes (PRO) have been developed. Following the recommendations of the Scientific Advisory Committee of the Medical Outcomes Trust, the ePRO checklist provides a modular assessment for PRO instruments based on eight key attributes: conceptual and measurement model, reliability, validity, responsiveness, interpretability, respondent and administrative burden, alternative forms, and cross-cultural adaptation. Selected criteria describing each attribute in detail are also listed. The availability of explicit guidelines is expected to promote the development of better PRO measurement instruments. PMID:16464429

  20. Self-Reported Health Experiences of Children Living with Congenital Heart Defects: Including Patient-Reported Outcomes in a National Cohort Study

    PubMed Central

    Tadic, Valerija; Hogan, Ailbhe; Bull, Catherine; Rahi, Jugnoo Sangeeta; Dezateux, Carol

    2016-01-01

    Background Understanding children’s views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs. Methods In a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal questionnaires that included an open question about having a ‘heart problem’. We compared the characteristics of children with more and less severe cardiac diagnoses and, through collaborative inductive content analysis, investigated the subjective experiences and coping strategies described by children in both clinical severity groups. Results Text and/or drawings were returned by 436 children (246 boys [56%], mean age 12.1 years [SD 1.0; range 10–14]); 313 had less severe (LS) and 123 more severe (MS) cardiac diagnoses. At the most recent hospital visit, a higher proportion of the MS group were underweight (more than two standard deviations below the mean for age) or cyanosed (underweight: MS 20.0%, LS 9.9%; cyanosed: MS 26.2%, LS 3.5%). Children in the MS group described concerns about social isolation and feeling ‘different’, whereas children with less severe diagnoses often characterised their CHD as ‘not a big thing’. Some coping strategies were common to both severity groups, including managing health information to avoid social exclusion, however only children in the LS group considered their CHD ‘in the past’ or experienced a sense of survivorship. Conclusions Children’s reported experiences were not dependent on their cardiac diagnosis, although there were clear qualitative differences by clinical severity group. Children’s concerns emphasised social participation and our findings imply a need to shift the clinical focus from monitoring cardiac function to

  1. A user's guide to the disease management literature: recommendations for reporting and assessing program outcomes.

    PubMed

    Linden, Ariel; Roberts, Nancy

    2005-02-01

    Recently there has been tremendous growth in the number of lay-press articles and peer-reviewed journal articles reporting extraordinary improvements in health status and financial outcomes due to disease management (DM) interventions. However, closer scrutiny of these reports reveals serious flaws in research design and/or analysis, leaving many to question the veracity of the claims. In recent years, there have been numerous contributions to the literature on how to assess the quality of medical research papers. However, these guidelines focus primarily on randomized controlled trials, with little attention given to the observational study designs typically used in DM outcome studies. As such, general guides to evaluating the medical literature are inadequate in their utility to assist authors and readers of DM outcomes research. The purpose of this paper is to provide authors with a clear and comprehensive guide to the reporting of DM outcomes, as well as to educate readers of the DM literature (both lay and peer reviewed) in how to assess the quality of the findings presented. PMID:15726859

  2. The MPC&A Questionnaire

    SciTech Connect

    Powell, Danny H; Elwood Jr, Robert H

    2011-01-01

    The questionnaire is the instrument used for recording performance data on the nuclear material protection, control, and accountability (MPC&A) system at a nuclear facility. The performance information provides a basis for evaluating the effectiveness of the MPC&A system. The goal for the questionnaire is to provide an accurate representation of the performance of the MPC&A system as it currently exists in the facility. Performance grades for all basic MPC&A functions should realistically reflect the actual level of performance at the time the survey is conducted. The questionnaire was developed after testing and benchmarking the material control and accountability (MC&A) system effectiveness tool (MSET) in the United States. The benchmarking exercise at the Idaho National Laboratory (INL) proved extremely valuable for improving the content and quality of the early versions of the questionnaire. Members of the INL benchmark team identified many areas of the questionnaire where questions should be clarified and areas where additional questions should be incorporated. The questionnaire addresses all elements of the MC&A system. Specific parts pertain to the foundation for the facility's overall MPC&A system, and other parts pertain to the specific functions of the operational MPC&A system. The questionnaire includes performance metrics for each of the basic functions or tasks performed in the operational MPC&A system. All of those basic functions or tasks are represented as basic events in the MPC&A fault tree. Performance metrics are to be used during completion of the questionnaire to report what is actually being done in relation to what should be done in the performance of MPC&A functions.

  3. Quality of life: patient-reported outcomes after total replacement of the temporomandibular joint.

    PubMed

    Kunjur, J; Niziol, R; Matthews, N S

    2016-09-01

    Since publication of the UK guidelines on total replacement of the temporomandibular joint (TMJ) in 2008 by the British Association of Oral and Maxillofacial Surgeons (BAOMS), pain scores, mouth opening, and diet have been used as markers of success. We have looked at quality of life (QoL) as another. We analysed the data from a single surgeon on patients who had had joints replaced and devised a questionnaire to find out about the subjective, functional, psychological, and social aspects of TMJ disease. A total of 18 patients who had the same operation were included (mean (range) age 50 (33 - 73) years, mean (range) follow up 30 (18 - 48) months). Jaw function and facial aesthetics had improved, and patients needed less analgesia. Overall, they reported a better QoL with improvements in mood and social interaction, and the activities of daily life were easier. The NHS uses QoL questionnaires to measure success in fields such as orthopaedic surgery, but currently we know of no nationally accepted questionnaire that measures success after total replacement of the TMJ. PMID:27209222

  4. Patient-reported outcomes following a physiotherapy rehabilitation programme for atraumatic posterior shoulder subluxation

    PubMed Central

    Mackie, Ann; Wallace, W Angus

    2014-01-01

    Background There is a paucity of research that describes the patient-reported benefits of physiotherapy rehabilitation for atraumatic posterior instability despite non-operative treatment being considered the initial treatment of choice. This retrospective case series review describes the patient-reported outcomes following a physiotherapy rehabilitation programme for atraumatic posterior shoulder instability. Methods Nineteen consecutive patients with a clinical diagnosis of atraumatic posterior shoulder subluxation completed our physiotherapy programme. All patients completed Oxford Instability Shoulder scores (OISS) and Western Ontario Shoulder Instability Index (WOSI) scores before and after physiotherapy intervention. Results Patients reported a statistically significant clinical improvement in the main outcome measures following physiotherapy intervention. The OISS showed a mean improvement of 18.6 points, whereas the WOSI score showed a mean improvement of 37.2%. Following physiotherapy rehabilitation, all patients reported that their shoulder did not prevent them from performing their work/studies or their chosen hobbies/sports. Conclusions Our results support the view that specialized physiotherapy rehabilitation is a valuable treatment option for atraumatic posterior shoulder instability and reveal significant clinically important improvements in patient-reported outcomes.

  5. Gender differences in self reported long term outcomes following moderate to severe traumatic brain injury

    PubMed Central

    2010-01-01

    Background The majority of research on health outcomes after a traumatic brain injury is focused on male participants. Information examining gender differences in health outcomes post traumatic brain injury is limited. The purpose of this study was to investigate gender differences in symptoms reported after a traumatic brain injury and to examine the degree to which these symptoms are problematic in daily functioning. Methods This is a secondary data analysis of a retrospective cohort study of 306 individuals who sustained a moderate to severe traumatic brain injury 8 to 24 years ago. Data were collected using the Problem Checklist (PCL) from the Head Injury Family Interview (HIFI). Using Bonferroni correction, group differences between women and men were explored using Chi-square and Wilcoxon analysis. Results Chi-square analysis by gender revealed that significantly more men reported difficulty setting realistic goals and restlessness whereas significantly more women reported headaches, dizziness and loss of confidence. Wilcoxon analysis by gender revealed that men reported sensitivity to noise and sleep disturbances as significantly more problematic than women, whereas for women, lack of initiative and needing supervision were significantly more problematic in daily functioning. Conclusion This study provides insight into gender differences on outcomes after traumatic brain injury. There are significant differences between problems reported by men compared to women. This insight may facilitate health service planners and clinicians when developing programs for individuals with brain injury. PMID:21029463

  6. Epidemiology and Outcome of Trichosporon Fungemia: A Review of 185 Reported Cases From 1975 to 2014

    PubMed Central

    Liao, Yong; Lu, Xuelian; Yang, Suteng; Luo, Yi; Chen, Qi; Yang, Rongya

    2015-01-01

    Background. Trichosporon species have emerged as an important non-Candida spp yeast pathogen in immunocompromised patients in recent decades; however, the systemic analysis of Trichosporon epidemiology has seldom been reported. Methods. We reviewed 185 reported cases of Trichosporon fungemia from 1975 to 2014 in the English-language literature, and the epidemiology and prognostic factors of the included cases are described. Results. The number of cases reported has increased with time, especially over the past decade. During the 3 decades from 1975 to 2004, the most commonly used antifungal compounds were amphotericin B/liposomal amphotericin B; however, in recent decades (2005–2014), triazoles (especially voriconazole) have become the most widely used agents, significantly improving outcome in the reported cases. Correlation analysis revealed that negative outcome is associated with several prognostic factors, including a history of antimicrobial use, bacterial bloodstream coinfection, prophylactic/empirical antifungal therapy, Trichosporon beigelii infection, and receiving the antifungal regimen of amphotericin B/liposomal amphotericin B. In addition, a significantly greater proportion of patients with a positive outcome had fungemia without invasive tissue infection and received a voriconazole regimen or an AmB-triazole combined regimen. Significant positive outcome was also associated with patients who had recovered from neutropenia or after central venous catheter removal. Conclusions. Voriconazole can be recommended as a first-line antifungal compound to treat Trichosporon fungemia; the immune status of the host plays a crucial role in the outcome of this infection, and the removal of vascular catheters should be considered if feasible. PMID:26566536

  7. Epidemiology and Outcome of Trichosporon Fungemia: A Review of 185 Reported Cases From 1975 to 2014.

    PubMed

    Liao, Yong; Lu, Xuelian; Yang, Suteng; Luo, Yi; Chen, Qi; Yang, Rongya

    2015-12-01

    Background.  Trichosporon species have emerged as an important non-Candida spp yeast pathogen in immunocompromised patients in recent decades; however, the systemic analysis of Trichosporon epidemiology has seldom been reported. Methods.  We reviewed 185 reported cases of Trichosporon fungemia from 1975 to 2014 in the English-language literature, and the epidemiology and prognostic factors of the included cases are described. Results.  The number of cases reported has increased with time, especially over the past decade. During the 3 decades from 1975 to 2004, the most commonly used antifungal compounds were amphotericin B/liposomal amphotericin B; however, in recent decades (2005-2014), triazoles (especially voriconazole) have become the most widely used agents, significantly improving outcome in the reported cases. Correlation analysis revealed that negative outcome is associated with several prognostic factors, including a history of antimicrobial use, bacterial bloodstream coinfection, prophylactic/empirical antifungal therapy, Trichosporon beigelii infection, and receiving the antifungal regimen of amphotericin B/liposomal amphotericin B. In addition, a significantly greater proportion of patients with a positive outcome had fungemia without invasive tissue infection and received a voriconazole regimen or an AmB-triazole combined regimen. Significant positive outcome was also associated with patients who had recovered from neutropenia or after central venous catheter removal. Conclusions.  Voriconazole can be recommended as a first-line antifungal compound to treat Trichosporon fungemia; the immune status of the host plays a crucial role in the outcome of this infection, and the removal of vascular catheters should be considered if feasible. PMID:26566536

  8. Patient-Reported Outcome Assessments as Endpoints in Studies in Infectious Diseases.

    PubMed

    Powers, John H; Howard, Kellee; Saretsky, Todd; Clifford, Sarah; Hoffmann, Steve; Llorens, Lily; Talbot, George

    2016-08-15

    The goal of administering medical interventions is to help patients live longer or live better. In keeping with this goal, there has been increasing interest in taking the "voice" of the patient into account during the development process, specifically in the evaluation of treatment benefits of medical interventions, and use of patient-centered outcome data to justify reimbursement. Patient-reported outcomes (PROs) are outcome assessments (OAs) used to define endpoints that can provide direct evidence of treatment benefit on how patients feel or function. When PROs are appropriately developed, they can increase the efficiency and clinical relevance of clinical trials. Several PROs have been developed for OA in specific infectious diseases indications, and more are under development. PROs also hold promise for use in evaluating adherence, adverse effects, satisfaction with care, and routine clinical practice. PMID:27481954

  9. Cognitive Interviewing in the Evaluation of Fatigue Items: Results from the Patient-Reported Outcomes Measurement Information System (PROMIS)

    PubMed Central

    Christodoulou, Christopher; Junghaenel, Doerte U.; DeWalt, Darren A.; Rothrock, Nan; Stone, Arthur A.

    2010-01-01

    Objectives Cognitive Interviewing (CI) is a technique increasingly used to obtain respondent feedback on potential items during questionnaire development. No standard guidelines exist by which to incorporate CI feedback in deciding to retain, revise, or eliminate potential items. We used CI in developing fatigue items for the National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS) Roadmap initiative. Our aims were to describe the CI process, formally evaluate the utility of decisions made on the basis of CI, and offer suggestions for future research. Methods Participants were 22 patients with a diverse range of chronic health conditions. During CI, each participant provided feedback on a series of items. We then reviewed the CI data and decided whether to retain, revise, or eliminate each potential item. Following this, we developed or adopted three quantitative methods to compare retained versus eliminated items. Results Retained items raised fewer serious concerns, were less likely to be viewed as non-applicable, and were less likely to display problems with clarity or to make incorrect assumptions about respondents. Conclusions CI was useful in developing the PROMIS fatigue items and the methods used to judge CI for the present item set may be useful for future investigations. PMID:18850327

  10. Power and sample size determination for group comparison of patient-reported outcomes using polytomous Rasch models.

    PubMed

    Hardouin, Jean-Benoit; Blanchin, Myriam; Feddag, Mohand-Larbi; Le Néel, Tanguy; Perrot, Bastien; Sébille, Véronique

    2015-07-20

    The analysis of patient-reported outcomes or other psychological traits can be realized using the Rasch measurement model. When the objective of a study is to compare groups of individuals, it is important, before the study, to define a sample size such that the group comparison test will attain a given power. The Raschpower procedure (RP) allows doing so with dichotomous items. The RP is extended to polytomous items. Several computational issues were identified, and adaptations have been proposed. The performance of this new version of RP is assessed using simulations. This adaptation of RP allows obtaining a good estimate of the expected power of a test to compare groups of patients in a large number of practical situations. A Stata module, as well as its implementation online, is proposed to perform the RP. Two versions of the RP for polytomous items are proposed (deterministic and stochastic versions). These two versions produce similar results in all of the tested cases. We recommend the use of the deterministic version, when the measure is obtained using small questionnaires or items with a few number of response categories, and the stochastic version elsewhere, so as to optimize computing time. PMID:25787270

  11. Systematic review of measurement properties of patient-reported outcome measures used in patients undergoing hip and knee arthroplasty

    PubMed Central

    Harris, Kristina; Dawson, Jill; Gibbons, Elizabeth; Lim, Chris R; Beard, David J; Fitzpatrick, Raymond; Price, Andrew J

    2016-01-01

    Objectives To identify patient-reported outcome measures (PROMs) that have been developed and/or used with patients undergoing hip or knee replacement surgery and to provide a shortlist of the most promising generic and condition-specific instruments. Methods A systematic review of the literature was performed to identify measures used in patients undergoing hip and knee replacement and extract and evaluate information on their methodological quality. Results Thirty-two shortlisted measures were reviewed for the quality of their measurement properties. On the basis of the review criteria, the measures with most complete evidence to date are the Oxford Hip Score (OHS) (for patients undergoing hip replacement surgery) and the Oxford Knee Score (OKS), with OKS-Activity and Participation Questionnaire (for patients undergoing knee replacement surgery). Conclusion A large number of these instruments lack essential evidence of their measurement properties (eg, validity, reliability, and responsiveness) in specific populations of patients. Further research is required on almost all of the identified measures. The best-performing condition-specific PROMs were the OKS, OHS, and Western Ontario and McMaster Universities Osteoarthritis Index. The best-performing generic measure was the Short Form 12. Researchers can use the information presented in this review to inform further psychometric studies of the reviewed measures. PMID:27524925

  12. Childhood predictors and age 48 outcomes of self-reports and official records of offending

    PubMed Central

    DUBOW, ERIC F.; HUESMANN, L. ROWELL; BOXER, PAUL; SMITH, CATHY

    2014-01-01

    Background The key question is: are self-reports and official records equally valid indicators of criminal offending? Aims We examine the correspondence between self-reports and official records of offending, the similarity of childhood and adolescent individual and contextual predictors of both measures of offending, and the similarity of age 48 correlates of both measures of offending. Methods Men (N = 436) from the Columbia County Longitudinal Study, a sample of all 3rd graders in Columbia County, New York, in 1959–60, participated. The youth, their peers and their parents were interviewed when the youth were age 8; the youth were later interviewed at ages 19, 30 and 48. Results We found moderate to high correspondence between self-reports of having been in trouble with the law and official arrest records. Lifetime self-reports and official records of offending were generally predicted by the same childhood and adolescent variables, and were correlated with many of the same adult outcome measures. By age 48, life-course non-offenders defined by either self-reports or official records had better outcomes than offenders. Conclusions The results validate the use of adolescent and adult self-reports of offending, and the early identification of individuals at risk for adult criminal behaviour through childhood parent and peer reports and adolescent self and peer reports. PMID:25294162

  13. Update on Outcome Measure Development for Large Vessel Vasculitis: Report from OMERACT 12

    PubMed Central

    Aydin, Sibel Zehra; Direskeneli, Haner; Sreih, Antoine; Alibaz-Oner, Fatma; Gul, Ahmet; Kamali, Sevil; Hatemi, Gulen; Kermani, Tanaz; Mackie, Sarah L.; Mahr, Alfred; Meara, Alexa; Milman, Nataliya; Nugent, Heidi; Robson, Joanna; Tomasson, Gunnar; Merkel, Peter A.

    2015-01-01

    Objective The rarity of large vessel vasculitis (LVV) is a major factor limiting randomized controlled trials in LVV, resulting in treatment choices in these diseases that are guided mainly by observational studies and expert opinion. Further complicating trials in LVV is the absence of validated and meaningful outcome measures. The Outcome Measures in Rheumatology (OMERACT) vasculitis working group initiated the Large Vessel Vasculitis task force in 2009 to develop data-driven, validated outcome tools for clinical investigation in LVV. This report summarizes the progress that has been made on a disease activity assessment tool and patient-reported outcomes in LVV as well as the group’s research agenda. Methods The OMERACT LVV task force brought an international group of investigators and patient research partners together to work collaboratively on developing outcome tools. The group initially focused on disease activity assessment tools in LVV. Following a systematic literature review, an international Delphi exercise was conducted to obtain expert opinion on principles and domains for disease assessment. The OMERACT vasculitis working group’s LVV task force is also conducting qualitative research with patients, including interviews, focus groups, and engaging patients as research partners, all to ensure that the approach to disease assessment includes measures of patients’ perspectives and that patients have input into the research agenda and process. Results The preliminary results of both the Delphi exercise and the qualitative interviews were discussed at the OMERACT 12 (2014) meeting and the completion of the analyses will produce an initial set of domains and instruments to form the basis of next steps in the research agenda. Conclusion The research agenda continues to evolve, with the ultimate goal of developing an OMERACT-endorsed core set of outcome measures for use in clinical trials of LVV. PMID:26077399

  14. Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology

    PubMed Central

    de Wit, M P T; Kvien, T K; Gossec, L

    2015-01-01

    Introduction Patient-reported outcomes (PROs) are important instruments to evaluate healthcare interventions, both in clinical practice and clinical research. Objective To describe how representation of the perspective of people with psoriatic arthritis was obtained through active participation on different levels in the development of PROs. Methods This case study focuses on the methods of involving patients in the elaboration and validation of the Psoriatic Arthritis Impact of Disease (PsAID) score. We used the concept of the participation ladder and the European League Against Rheumatism (EULAR) recommendations for the involvement of patient representatives in scientific projects to analyse the variety of ways patients participated in this process. Results Two patient experts were part of the steering group. 12 patient research partners, coming from 12 different European countries, participated in identifying domains, formulating items for the questionnaire and determining the number of items, the recall period and the questionnaire format. They also helped with the translation of the items into different European languages. Then, 139 patients took part in ranking and prioritising the domains for importance; 65 patients were involved in cognitive debriefing interviews; 499 new patients were recruited for the validation study. Challenges of patient participation in PRO development, such as the representation of patients, are discussed. Conclusions Making patient participation an integral part of the PRO development and validation process is an important requisite for outcome research. The variety of patient contributions at different phases in this case study resulted in an instrument with high face validity. PMID:26509075

  15. Self-reported and performance-based outcomes using DEKA Arm.

    PubMed

    Resnik, Linda; Borgia, Matthew; Latlief, Gail; Sasson, Nicole; Smurr-Walters, Lisa

    2014-01-01

    Mechanical properties of the DEKA Arm and associated engineering innovations are easy to observe. What is less clear is how these advances translate into functional benefits for the user with amputation. Study aims were to (1) quantify outcomes including dexterity, performance of daily activities, and prosthetic skill and spontaneity of users of the DEKA Arm and (2) compare outcomes when using the DEKA Arm with scores using the existing prosthesis. This was a quasi-experimental study. Descriptive analyses examined outcomes by DEKA Arm configuration level. Of the 39 subjects fit with a DEKA Arm, 32 were trained in use and completed end-of-study testing. Data from 26 prosthetic users were used to compare outcomes using existing prostheses with outcomes with the DEKA Arm. Dexterity and activity performance with the DEKA Arm varied by amputation level (p < 0.01). Self-reported function and number of activities performed using the prosthesis were similar across levels. Comparisons with existing prostheses showed the effect on dexterity varied by level. Activity performance and spontaneity of prosthetic use improved for users of the shoulder configuration level, while use of the prosthesis to perform activities and perceived difficulty performing self-selected tasks improved for all levels. PMID:25019659

  16. Feasibility study to examine discrepancy rates in prespecified and reported outcomes in articles submitted to The BMJ

    PubMed Central

    Weston, Jennifer; Dwan, Kerry; Altman, Douglas; Clarke, Mike; Gamble, Carrol; Schroter, Sara; Williamson, Paula; Kirkham, Jamie

    2016-01-01

    Objectives Adding, omitting or changing prespecified outcomes can result in bias because it increases the potential for unacknowledged or post hoc revisions of the planned analyses. Journals have adopted initiatives such as requiring the prospective registration of trials and the submission of study protocols to promote the transparency of reporting in clinical trials. The main objective of this feasibility study was to document the frequency and types of outcome discrepancy between prespecified outcomes in the protocol and reported outcomes in trials submitted to The BMJ. Methods A review of all 3156 articles submitted to The BMJ between 1 September 2013 and 30 June 2014. Trial registry entries, protocols and trial reports of randomised controlled trials published by The BMJ and a random sample of those rejected were reviewed. Editorial, peer reviewer comments and author responses were also examined to ascertain any reasons for discrepancies. Results In the study period, The BMJ received 311 trial manuscripts, 21 of which were subsequently published by the journal. In trials published by The BMJ, 27% (89/333) of the prespecified outcomes in the protocol were not reported in the submitted paper and 11% (31/275) of reported outcomes were not prespecified. In the sample of 21 trials rejected by The BMJ, 19% (63/335) of prespecified outcomes went unreported and 14% (45/317) of reported outcomes were not prespecified. None of the reasons provided by published authors were suggestive of outcome reporting bias as the reasons were unrelated to the results. Conclusions Mandating the prospective registration of a trial and requesting that a protocol be uploaded when submitting a trial article to a journal has the potential to promote transparency and safeguard the evidence base against outcome reporting biases as a result of outcome discrepancies. Further guidance is needed with regard to documenting reasons for outcome discrepancies. PMID:27105712

  17. From Protocols to Publications: A Study in Selective Reporting of Outcomes in Randomized Trials in Oncology

    PubMed Central

    Raghav, Kanwal Pratap Singh; Mahajan, Sminil; Yao, James C.; Hobbs, Brian P.; Berry, Donald A.; Pentz, Rebecca D.; Tam, Alda; Hong, Waun K.; Ellis, Lee M.; Abbruzzese, James; Overman, Michael J.

    2015-01-01

    Purpose The decision by journals to append protocols to published reports of randomized trials was a landmark event in clinical trial reporting. However, limited information is available on how this initiative effected transparency and selective reporting of clinical trial data. Methods We analyzed 74 oncology-based randomized trials published in Journal of Clinical Oncology, the New England Journal of Medicine, and The Lancet in 2012. To ascertain integrity of reporting, we compared published reports with their respective appended protocols with regard to primary end points, nonprimary end points, unplanned end points, and unplanned analyses. Results A total of 86 primary end points were reported in 74 randomized trials; nine trials had greater than one primary end point. Nine trials (12.2%) had some discrepancy between their planned and published primary end points. A total of 579 nonprimary end points (median, seven per trial) were planned, of which 373 (64.4%; median, five per trial) were reported. A significant positive correlation was found between the number of planned and nonreported nonprimary end points (Spearman r = 0.66; P < .001). Twenty-eight studies (37.8%) reported a total of 65 unplanned end points; 52 (80.0%) of which were not identified as unplanned. Thirty-one (41.9%) and 19 (25.7%) of 74 trials reported a total of 52 unplanned analyses involving primary end points and 33 unplanned analyses involving nonprimary end points, respectively. Studies reported positive unplanned end points and unplanned analyses more frequently than negative outcomes in abstracts (unplanned end points odds ratio, 6.8; P = .002; unplanned analyses odd ratio, 8.4; P = .007). Conclusion Despite public and reviewer access to protocols, selective outcome reporting persists and is a major concern in the reporting of randomized clinical trials. To foster credible evidence-based medicine, additional initiatives are needed to minimize selective reporting. PMID:26304898

  18. Nonshaved cranial surgery in black Africans: technical report and a medium-term prospective outcome study.

    PubMed

    Adeleye, Amos O

    2016-07-01

    Nonshaved neurosurgery, cranial or spinal, is well reported among Caucasians but hardly among native Africans. The ungroomed scalp hairs of black Africans have unique anthropological characteristics needing special attention for shaveless cranial surgery. A technical report of the execution of this surgical procedure among an indigenous patient population in a sub-Sahara African country is presented, as well as an outcome analysis in a prospective cohort over a 7-year period. A total of 303 patients (211 males, 70 %) fulfilled the criteria for this study. The surgical procedure was primary in 278 (92 %) and redo in 8 %. It was emergency surgery in 153 (51 %). They were trauma craniotomies or decompressive craniectomies in 95 cases (31 %), craniotomies for tumour resections in 86 (28 %), and the surgical dissections for other conditions in 122 (41 %). The duration of surgery ranged from 30 min to 8.5 h, mean 2.5 (SD, 1.6), median 2. In-hospital clinical outcome was good (normal status or moderate deficit on dichotomized Glasgow outcome scale (GOS)) in 273 (90.1 %) cases while surgical site infections occurred in only 10 cases (3.3 %). The type of surgery, redo or primary, did not have any significant association with the in-hospital outcome (p = 0.5), nor with the presence of surgical site infection (SSI) (p = 0.7). The length of follow-up ranged from 2 to 63 months (mean, 7) with no untoward complications reported so far. Medium-term outcome of nonshaved neurosurgery in this indigenous black Africans remains favourable with no attendant significant adverse after-effects. PMID:26873745

  19. Patient-reported outcomes in post-traumatic stress disorder Part I: Focus on psychological treatment

    PubMed Central

    d'Ardenne, Patricia; Heke, Sarah

    2014-01-01

    Since 2000, patient reports have contributed significantly to the widening diagnostic criteria for post-traumatic stress disorder, notably with the inclusion of complex, repeated, and indirect threat to people who develop symptoms. This paper describes and explains why patient reports matter, through worldwide mental health users' movements and the human rights movement. It looks at 46 recent patient-reported outcomes of preferred psychological treatments in clinical research and practice, and compares them with clinician-reported outcomes, using rating scales that diagnose and measure therapeutic gains. Attention is given to one qualitative study of survivors of the London bombings as an example of patients' personal traumatic experiences. Understanding patients' views and their limitations can help increase success in trauma-focused therapy outcomes, particularly where patients fail to engage with or complete treatment, where they doubt the validity of the treatment, or do not see it as culturally appropriate, or fear of revisiting the past. Specific recommendations are made for a more collaborative approach with patients in psychiatric and community care and clinical research. PMID:25152659

  20. Patient-reported outcomes in post-traumatic stress disorder. Part I: focus on psychological treatment.

    PubMed

    d'Ardenne, Patricia; Heke, Sarah

    2014-06-01

    Since 2000, patient reports have contributed significantly to the widening diagnostic criteria for post-traumatic stress disorder, notably with the inclusion of complex, repeated, and indirect threat to people who develop symptoms. This paper describes and explains why patient reports matter, through worldwide mental health users' movements and the human rights movement. It looks at 46 recent patient-reported outcomes of preferred psychological treatments in clinical research and practice, and compares them with clinician-reported outcomes, using rating scales that diagnose and measure therapeutic gains. Attention is given to one qualitative study of survivors of the London bombings as an example of patients' personal traumatic experiences. Understanding patients' views and their limitations can help increase success in trauma-focused therapy outcomes, particularly where patients fail to engage with or complete treatment, where they doubt the validity of the treatment, or do not see it as culturally appropriate, or fear of revisiting the past. Specific recommendations are made for a more collaborative approach with patients in psychiatric and community care and clinical research. PMID:25152659

  1. Is the use of antidepressants associated with patient-reported outcomes following total hip replacement surgery?

    PubMed

    Greene, Meridith E; Rolfson, Ola; Gordon, Max; Annerbrink, Kristina; Malchau, Henrik; Garellick, Göran

    2016-10-01

    Background and purpose - Patients with anxiety and/or depression tend to report less pain reduction and less satisfaction with surgical treatment. We hypothesized that the use of antidepressants would be correlated to patient-reported outcomes (PROs) 1 year after total hip replacement (THR), where increased dosage or discontinuation would be associated with worse outcomes. Patients and methods - THR cases with pre- and postoperative patient-reported outcome measures (PROMs) were selected from the Swedish Hip Arthroplasty Register (n = 9,092; women: n = 5,106). The PROMs were EQ-5D, visual analog scale (VAS) for pain, Charnley class, and VAS for satisfaction after surgery. These cases were merged with a national database of prescription purchases to determine the prevalence of antidepressant purchases. Regression analyses were performed where PROs were dependent variables and sex, age, Charnley class, preoperative pain, preoperative health-related quality of life (HRQoL), patient-reported anxiety/depression, and antidepressant use were independent variables. Results - Antidepressants were used by 10% of the cases (n = 943). Patients using antidepressants had poorer HRQoL and higher levels of pain before and after surgery and they experienced less satisfaction. Preoperative antidepressant use was independently associated with PROs 1 year after THR regardless of patient-reported anxiety/depression. Interpretation - Antidepressant usage before surgery was associated with reduced PROs after THR. Cases at risk of poorer outcomes may be identified through review of the patient's medical record. Clinicians are encouraged to screen for antidepressant use preoperatively, because their use may be associated with PROs after THR. PMID:27482877

  2. Postpartum Depressive Symptoms Across Time and Place: Structural Invariance of the Self-Reporting Questionnaire Among Women from the International, Multi-Site MAL-ED Study

    PubMed Central

    Pendergast, Laura L.; Scharf, Rebecca J.; Rasmussen, Zeba A.; Seidman, Jessica C.; Schaefer, Barbara A.; Svensen, Erling; Tofail, Fahmida; Koshy, Beena; Kosek, Margaret; Rasheed, Muneera A.; Roshan, Reeba; Maphula, Angelina; Shrestha, Rita; Murray-Kolb, Laura E.

    2014-01-01

    Background The Self-Reporting Questionnaire (SRQ) is a screening instrument that has been shown to be an effective measure of depression in postpartum women and is widely used in developing nations. Methods The SRQ was administered to 2,028 mothers from eight nations at two time points: one and six months postpartum. All data were obtained from the Interactions of Malnutrition and Enteric Infections: Consequences for Child Health and Development (MAL-ED) study. The sample included women from MAL-ED sites in Bangladesh, Brazil, India, Nepal, Pakistan, Peru, South Africa, and Tanzania. This study examined three aspects of validity of SRQ scores including (a) structural validity, (b) cross-cultural invariance, and (c) invariance over time. Results A 16-item, one-factor structure with items reflecting somatic symptoms removed was deemed to be superior to the original structure in this postpartum population. Although differential item functioning (DIF) across sites was evident, the one-factor model was a good fit to the data from seven sites, and the structure was invariant across the one- and six-month time points. Limitations Findings are based on data from self-report scales. No information about the clinical status of the participants was available. Conclusions Overall, findings support the validity of a modified model of the SRQ among postpartum women. Somatic symptoms (e.g., headaches, not sleeping well) may not reflect internalizing problems in a postpartum population. Implications for researchers and practitioners are discussed. PMID:24981251

  3. Cross-cultural validation of the Falls Efficacy Scale International (FES-I) using self-report and interview-based questionnaires among Persian-speaking elderly adults.

    PubMed

    Baharlouei, Hamzeh; Salavati, Mahyar; Akhbari, Behnam; Mosallanezhad, Zahra; Mazaheri, Masood; Negahban, Hossein

    2013-01-01

    FES-I has been designed to assess fear of falling (FoF). The purpose of this study was to establish the Persian-language version of the FES-I and to assess its psychometric properties under different modes of administration: self-report and interview-based. Participants included 191 elderly people aged over 60 who were mostly community dwelling. With an interval of 14 days, 97 volunteers completed the questionnaire in the retest session. To evaluate the construct validity, we assessed the ability of the FES-I to discriminate people based on gender, level of education, number of falls and FoF. The correlation with the Short Form of Health Survey (SF-36), Timed Up and Go (TUG) and Functional Reach Test (FRT) was also determined to test validity. Internal consistency was excellent in both self-report (0.93) and interview (0.92) versions. All intra-class correlations (ICCs) were above 0.70 with the highest reliability obtained for the condition where the interview based FES-I was used in both test and retest sessions. The strength of correlation between the FES-I and TUG varied based on mode of administration: moderate for interview and high for self-report mode. The FES-I had a higher correlation with the SF-36 subscales of physical health than subscales of mental health. The FES-I had the ability to discriminate the participants based on gender, educational level, and number of falls and FoF. In conclusion, both interview and self-report versions of the FES-I demonstrated acceptable measurement properties to assess FoF in Iranian elderly persons. PMID:23830993

  4. The development of a congenital heart programme quality dashboard to promote transparent reporting of outcomes.

    PubMed

    Anand, Vijay; Cave, Dominic; McCrady, Heather; Al-Aklabi, Mohammed; Ross, David B; Rebeyka, Ivan M; Adatia, Ian

    2015-12-01

    In 2001, the Institute of Medicine identified healthcare transparency as a necessity for re-designing a quality healthcare system; however, despite widespread calls for publicly available transparent data, the goal remains elusive. The transparent reporting of outcome data and the results of congenital heart surgery is critical to inform patients and families who have both the wish and the ability to choose where care is provided. Indeed, in an era where data and means of communication of data have never been easier, the paucity of transparent data reporting is paradoxical. We describe the development of a quality dashboard used to inform staff, patients, and families about the outcomes of congenital heart surgery at the Stollery Children's Hospital. PMID:26675607

  5. Toward a better understanding of patient-reported outcomes in clinical practice.

    PubMed

    Bitton, Asaf; Onega, Tracy; Tosteson, Anna N A; Haas, Jennifer S

    2014-04-01

    Current shifts toward patient-centered healthcare and accountable payment options point to the more personalized production of better health, not just healthcare, as a next organizational paradigm. Transformation to a system geared toward promoting health requires us to think broadly about what it means to engage patients meaningfully, to give them a voice in their health and care, and to capture more of their varied experience and attitudes beyond the provider visit. The collection and use of patient-reported outcome data into electronic health records represents an important step forward for the transition to a more patient-centered health system. We set out an agenda for better understanding how and when patient-reported outcomes may improve patient health and care experience. PMID:24884859

  6. Wellness Coaching Outcomes in a Case Report of a Diabetic Native American Male

    PubMed Central

    2013-01-01

    Medically referred wellness coaching clients may present thinking patterns that generate internal resistance to change, including lack of urgency, inadequate incentives, and uncertainty about what they need to do differently.1 Applying the Wellcoaches (Wellcoaches Corp, Wellesley, Massachusetts) model interventions within a framework of the four domains of learning (cognitive, affective, behavioral, and conative)2 can enhance wellness coaching outcomes. This case report reviews wellness coaching outcomes with a 44-year-old single male tribal member of a Midwest Native American tribe who recently had been diagnosed with diabetes. Challenges presented by resistance to change and a discussion of the four domains of learning applied to wellness coaching are also reported. PMID:24278846

  7. Laparoscopic Management of Interstitial Pregnancy and Fertility Outcomes after Ipsilateral Salpingectomy – Three Case Reports

    PubMed Central

    Manea, Cristina; Pavlidou, Evangelia; Urias, Aline Andrey; Bouquet de la Jolinière, Jean; Dubuisson, Jean Bernard; Feki, Anis

    2014-01-01

    Background: Interstitial pregnancy after ipsilateral salpingectomy is a rare event with potentially serious consequences. Optimal management strategy remains uncertain and debated. In addition, fertility sparing is determinant of the treatment choice. Cases: Here, we report three cases of interstitial pregnancy occurring after homolateral salpingectomy. We expose the therapeutic option held in all three situations, which associated laparoscopic procedure followed by intramuscular methotrexate injection with successful outcome for all patients. We also report the fertility outcome for the first patient, discussing the timing and mode of delivery. Cesarean section at term was performed for this patient. Conclusion: In these three situations, we obtained a successful result using a minimally invasive surgical approach combined with systemic methotrexate injection. Cesarean section at term for subsequent intrauterine pregnancy seems to be the safest delivery strategy, although no clear data exist in literature. PMID:25593958

  8. Surgical treatment achieves better outcome in severe traumatic pericallosal aneurysm: case report and literature review

    PubMed Central

    Sui, Mingxing; Mei, Qiyong; Sun, Kehua

    2015-01-01

    Traumatic pericallosal aneurysm (TPA) is typically seldom yet potentially lethal. Because of its rarity, also complicated by the unpredictable delayed-onset, TPA is more difficult to be diagnosed promptly. Due to the sporadic reports and diverse opinions on the priority of surgical treatment, a consensus about effective management of TPA has not been reached. Here we report a 55 year-old male patient with TPA, who received an emergent craniotomy to clip the pseudoaneurysm and remove the hematoma under intense intracranial pressure (ICP) monitoring. A satisfactory clinical outcome was achieved at a 3-month follow-up. Thereafter, a review was conducted to evaluate the outcomes of different managing modalities. PMID:25932088

  9. Good visual outcome in an immunocompromised patient with bilateral acute retinal necrosis syndrome: A case report

    PubMed Central

    Marrocos de Aragão, Ricardo E.; Barreira, Ieda M.A.; Arrais, Barbara L.A.; Pereira, Leidiane A.; Ramos, Carine S.

    2013-01-01

    Acute retinal necrosis (ARN) is an uncommon necrotizing, fulminant retinopathy caused by the herpes simplex virus types 1 or 2 or by the varicella zoster vírus with visually devastating consequences. Generally it occurs in patients who are systemically healthy, but occasionally occurs in immunocompromised host. We report a case of bilateral ARN in a patient with AIDS with a good final visual outcome. PMID:25278806

  10. Write Your Own Questionnaire

    ERIC Educational Resources Information Center

    Cook, David I.

    1975-01-01

    Contends that student evaluative questionnaires should be designed by instructors themselves to help improve their classroom performance and therefore should contain only questions that students are capable of answering objectively and not, for instance, questions about the relevancy of the course. Contains a sample questionnaire. (GH)

  11. Utah Drug Use Questionnaire.

    ERIC Educational Resources Information Center

    Governor's Citizen Advisory Committee on Drugs, Salt Lake City, UT.

    This questionnaire assesses drug use practices in junior and senior high school students. The 21 multiple choice items pertain to drug use practices, use history, available of drugs, main reason for drug use, and demographic data. The questionnaire is untimed, group administered, and may be given by the classroom teacher in about 10 minutes. Item…

  12. Henry County School Questionnaire.

    ERIC Educational Resources Information Center

    Goolsby, Thomas M., Jr.; Frary, Robert B.

    This 14-item questionnaire was designed to measure parent opinion regarding the effect of integration on third grade pupils in Henry County Schools. The questionnaire is not standardized, and field testing has been on a small scale. (See also TM 000 940 for a description of the study, and 942, 943 for the desegregation and school integration…

  13. Wesleyan University Student Questionnaire.

    ERIC Educational Resources Information Center

    Haagen, C. Hess

    This questionnaire assesses marijuana use practices in college students. The 30 items (multiple choice or free response) are concerned with personal and demographic data, marijuana smoking practices, use history, effects from smoking marijuana, present attitude toward the substance, and use of other drugs. The Questionnaire is untimed and…

  14. Questionnaire for Parents.

    ERIC Educational Resources Information Center

    Purdue Univ., Lafayette, IN. Educational Research Center.

    The 116-item parent questionnaire is designed for parents of elementary school children. It is intended to be used with the child's mother, or the person acting as the child's mother. The questionnaire consists of a section devoted to demographic variables and scales measuring 14 parent variables: (1) parent's achievement aspirations for the…

  15. Patient-reported outcomes: pathways to better health, better services, and better societies.

    PubMed

    Black, N; Burke, L; Forrest, C B; Sieberer, U H Ravens; Ahmed, S; Valderas, J M; Bartlett, S J; Alonso, J

    2016-05-01

    While the use of PROs in research is well established, many challenges lie ahead as their use is extended to other applications. There is consensus that health outcome evaluations that include PROs along with clinician-reported outcomes and administrative data are necessary to inform clinical and policy decisions. The initiatives presented in this paper underline evolving recognition that PROs play a unique role in adding the patient perspective alongside clinical (e.g., blood pressure) and organizational (e.g., admission rates) indicators for evaluating the effects of new products, selecting treatments, evaluating quality of care, and monitoring the health of the population. In this paper, we first explore the use of PRO measures to support drug approval and labeling claims. We critically evaluate the evidence and challenges associated with using PRO measures to improve healthcare delivery at individual and population levels. We further discuss the challenges associated with selecting from the abundance of measures available, opportunities afforded by agreeing on common metrics for constructs of interest, and the importance of establishing an evidence base that supports integrating PRO measures across the healthcare system to improve outcomes. We conclude that the integration of PROs as a key end point within individual patient care, healthcare organization and program performance evaluations, and population surveillance will be essential for evaluating whether increased healthcare expenditure is translating into better health outcomes. PMID:26563251

  16. Questionnaire to assess relevance and credibility of modeling studies for informing health care decision making: an ISPOR-AMCP-NPC Good Practice Task Force report.

    PubMed

    Jaime Caro, J; Eddy, David M; Kan, Hong; Kaltz, Cheryl; Patel, Bimal; Eldessouki, Randa; Briggs, Andrew H

    2014-03-01

    The evaluation of the cost and health implications of agreeing to cover a new health technology is best accomplished using a model that mathematically combines inputs from various sources, together with assumptions about how these fit together and what might happen in reality. This need to make assumptions, the complexity of the resulting framework, the technical knowledge required, as well as funding by interested parties have led many decision makers to distrust the results of models. To assist stakeholders reviewing a model's report, questions pertaining to the credibility of a model were developed. Because credibility is insufficient, questions regarding relevance of the model results were also created. The questions are formulated such that they are readily answered and they are supplemented by helper questions that provide additional detail. Some responses indicate strongly that a model should not be used for decision making: these trigger a "fatal flaw" indicator. It is hoped that the use of this questionnaire, along with the three others in the series, will help disseminate what to look for in comparative effectiveness evidence, improve practices by researchers supplying these data, and ultimately facilitate their use by health care decision makers. PMID:24636375

  17. Systematic Review of Radiation Therapy Toxicity Reporting in Randomized Controlled Trials of Rectal Cancer: A Comparison of Patient-Reported Outcomes and Clinician Toxicity Reporting

    SciTech Connect

    Gilbert, Alexandra; Ziegler, Lucy; Martland, Maisie; Davidson, Susan; Efficace, Fabio; Sebag-Montefiore, David; Velikova, Galina

    2015-07-01

    The use of multimodal treatments for rectal cancer has improved cancer-related outcomes but makes monitoring toxicity challenging. Optimizing future radiation therapy regimens requires collection and publication of detailed toxicity data. This review evaluated the quality of toxicity information provided in randomized controlled trials (RCTs) of radiation therapy in rectal cancer and focused on the difference between clinician-reported and patient-reported toxicity. Medline, EMBASE, and the Cochrane Library were searched (January 1995-July 2013) for RCTs reporting late toxicity in patients treated with regimens including preoperative (chemo)radiation therapy. Data on toxicity measures and information on toxicity reported were extracted using Quantitative Analyses of Normal Tissue Effects in the Clinic recommendations. International Society for Quality of Life Research standards on patient-reported outcomes (PROs) were used to evaluate the quality of patient-reported toxicity. Twenty-one RCT publications met inclusion criteria out of 4144 articles screened. All PRO studies reported higher rates of toxicity symptoms than clinician-reported studies and reported on a wider range and milder symptoms. No clinician-reported study published data on sexual dysfunction. Of the clinician-reported studies, 55% grouped toxicity data related to an organ system together (eg “Bowel”), and 45% presented data only on more-severe (grade ≥3) toxicity. In comparison, all toxicity grades were reported in 79% of PRO publications, and all studies (100%) presented individual symptom toxicity data (eg bowel urgency). However, PRO reporting quality was variable. Only 43% of PRO studies presented baseline data, 28% did not use any psychometrically validated instruments, and only 29% of studies described statistical methods for managing missing data. Analysis of these trials highlights the lack of reporting standards for adverse events and reveals the differences between clinician and

  18. Assessment of identity development and identity diffusion in adolescence - Theoretical basis and psychometric properties of the self-report questionnaire AIDA

    PubMed Central

    2012-01-01

    Background In the continuing revision of Diagnostic and Statistical Manual (DSM-V) “identity” is integrated as a central diagnostic criterion for personality disorders (self-related personality functioning). According to Kernberg, identity diffusion is one of the core elements of borderline personality organization. As there is no elaborated self-rating inventory to assess identity development in healthy and disturbed adolescents, we developed the AIDA (Assessment of Identity Development in Adolescence) questionnaire to assess this complex dimension, varying from “Identity Integration” to “Identity Diffusion”, in a broad and substructured way and evaluated its psychometric properties in a mixed school and clinical sample. Methods Test construction was deductive, referring to psychodynamic as well as social-cognitive theories, and led to a special item pool, with consideration for clarity and ease of comprehension. Participants were 305 students aged 12–18 attending a public school and 52 adolescent psychiatric inpatients and outpatients with diagnoses of personality disorders (N = 20) or other mental disorders (N = 32). Convergent validity was evaluated by covariations with personality development (JTCI 12–18 R scales), criterion validity by differences in identity development (AIDA scales) between patients and controls. Results AIDA showed excellent total score (Diffusion: α = .94), scale (Discontinuity: α = .86; Incoherence: α = .92) and subscale (α = .73-.86) reliabilities. High levels of Discontinuity and Incoherence were associated with low levels in Self Directedness, an indicator of maladaptive personality functioning. Both AIDA scales were significantly different between PD-patients and controls with remarkable effect sizes (d) of 2.17 and 1.94 standard deviations. Conclusion AIDA is a reliable and valid instrument to assess normal and disturbed identity in adolescents. Studies for further validation and for

  19. Spontaneous remission of membranous glomerulonephritis with successful fetal outcome: A case report and literature review.

    PubMed

    Huang, Yan-Mei; Zhou, Hui-Rong; Zhang, Ling; Yang, Ke-Ke; Luo, Jiang-Xi; Zhao, Hai-Lu

    2016-06-01

    Membranous glomerulonephritis (MGN) represents an immunologically mediated disease characterized by deposition of immune complexes in the glomerular subepithelial space. Persistent proteinuria at diagnosis predicts poor prognosis. Pregnancy with MGN is a risk of fetal loss and may worsen maternal renal function.Here, we report a lady with MGN and proteinuria achieved spontaneous remission and successful fetal outcome naive to any medications. The 26-year old woman had 1-year history of persistent proteinuria (5.5-12.56 g/24 hours) and biopsy-proven MGN. Histopathological characteristics included glomerular basement membrane spikes, subepithelial monoclonal IgG immunofluorescence, and diffuse electron dense deposits. She was sticking to a regular morning exercise routine without any medications. After successful delivery of a full-term baby girl, the mother had improved proteinuria (0.56 g/24 hours) and albuminuria (351.96 g/24 hours contrasting 2281.6 g/24 hours before pregnancy). The baby had normal height and body weight at 4 months old.We identified more pregnancies with MGN in 5 case reports and 5 clinical series review articles (7-33 cases included). Spontaneous remission of maternal MGN with good fetal outcome rarely occurred in mothers on immunosuppressive therapy.Mothers naive to immunosuppressive therapy may achieve spontaneous remission of maternal membranous glomerulonephritis and successful fetal outcome. Theoretically, fetus might donate stem cells to heal mother's kidney. PMID:27368022

  20. Preferred reporting items for studies mapping onto preference-based outcome measures: The MAPS statement.

    PubMed

    Petrou, Stavros; Rivero-Arias, Oliver; Dakin, Helen; Longworth, Louise; Oppe, Mark; Froud, Robert; Gray, Alastair

    2015-01-01

    'Mapping' onto generic preference-based outcome measures is increasingly being used as a means of generating health utilities for use within health economic evaluations. Despite publication of technical guides for the conduct of mapping research, guidance for the reporting of mapping studies is currently lacking. The MAPS (MApping onto Preference-based measures reporting Standards) statement is a new checklist, which aims to promote complete and transparent reporting of mapping studies. The primary audiences for the MAPS statement are researchers reporting mapping studies, the funders of the research, and peer reviewers and editors involved in assessing mapping studies for publication.A de novo list of 29 candidate reporting items and accompanying explanations was created by a working group comprised of six health economists and one Delphi methodologist. Following a two-round, modified Delphi survey with representatives from academia, consultancy, health technology assessment agencies and the biomedical journal editorial community, a final set of 23 items deemed essential for transparent reporting, and accompanying explanations, was developed. The items are contained in a user friendly 23 item checklist. They are presented numerically and categorised within six sections, namely: (i) title and abstract; (ii) introduction; (iii) methods; (iv) results; (v) discussion; and (vi) other. The MAPS statement is best applied in conjunction with the accompanying MAPS explanation and elaboration document.It is anticipated that the MAPS statement will improve the clarity, transparency and completeness of reporting of mapping studies. To facilitate dissemination and uptake, the MAPS statement is being co-published by eight health economics and quality of life journals, and broader endorsement is encouraged. The MAPS working group plans to assess the need for an update of the reporting checklist in five years' time.This statement was published jointly in Applied Health Economics

  1. Comparison of self-reported quality of vision outcomes after myopic LASIK with two femtosecond lasers: a prospective, eye-to-eye study

    PubMed Central

    Sáles, Christopher S; Manche, Edward E

    2016-01-01

    Purpose To compare self-reported quality of vision (QoV) outcomes after myopic LASIK (laser-assisted in situ keratomileusis) with two femtosecond lasers. Design Prospective, randomized, eye-to-eye study. Methods Consecutive myopic patients were treated with wavefront-guided LASIK bilaterally. Eyes were randomized according to ocular dominance. The flap of one eye was made with the IntraLase FS 60 kHz femtosecond laser with a conventional 70° side-cut, and the flap of the fellow eye was made with the IntraLase iFS 150 kHz femtosecond laser with an inverted 130° side-cut. Patients completed the validated, Rasch-tested, linear-scaled 30-item QoV questionnaire preoperatively and at Months 1, 3, 6, and 12. Results The study enrolled 120 fellow eyes in 60 patients. None of the measured QoV parameters exhibited statistically significant differences between the groups preoperatively or at any postoperative time point. Conclusion Creating LASIK flaps with an inverted side-cut using a 150 kHz femtosecond laser and with a conventional 70° side-cut using a 60 kHz femtosecond laser resulted in no significant differences in self-reported QoV assessed by the QoV questionnaire. PMID:27621589

  2. Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden

    PubMed Central

    Borg, Sixten; Palaszewski, Bo; Gerdtham, Ulf-G; Ödegaard, Fredrik; Roos, Pontus; Gudbjörnsdottir, Soffia

    2014-01-01

    Diabetes is one of the chronic diseases that constitute the greatest disease burden in the world. The Swedish National Diabetes Register is an essential part of the diabetes care system. Currently it mainly records clinical outcomes, but here we describe how it has started to collect patient-reported outcome measures, complementing the standard registry data on clinical outcomes as a basis for evaluating diabetes care. Our aims were to develop a questionnaire to measure patient abilities and judgments of their experience of diabetes care, to describe a Swedish diabetes patient sample in terms of their abilities, judgments, and risk factors, and to characterize groups of patients with a need for improvement. Patient abilities and judgments were estimated using item response theory. Analyzing them together with standard risk factors for diabetes comorbidities showed that the different types of data describe different aspects of a patient’s situation. These aspects occasionally overlap, but not in any particularly useful way. They both provide important information to decision makers, and neither is necessarily more relevant than the other. Both should therefore be considered, to achieve a more complete evaluation of diabetes care and to promote person-centered care. PMID:25431875

  3. Patient-Reported Outcomes Following Total Hip Arthroplasty Stratified by Body Mass Index.

    PubMed

    Wu, Eddie S; Cherian, Jeffrey J; Jauregui, Julio J; Robinson, Kristin; Harwin, Steven F; Mont, Michael A

    2016-05-01

    Obese patients undergoing total hip arthroplasty have been shown to have less functional recovery. This study prospectively compared temporal trends in patient-reported outcomes and activity levels between patients with a body mass index (BMI) of less than 30, 30 to 35, and 35 to 40 kg/m(2) after total hip arthroplasty. Patients were evaluated via the Harris Hip Score, Lower Extremity Activity Scale, and Short Form-12 physical and mental components. The results suggest that patients with BMIs of 35 to 40 kg/m(2) might have poorer functional outcomes preoperatively, with function returning more slowly or poor function being sustained and their not reaching other cohorts' levels. Surgeons must counsel these patients regarding functional expectations and the potential for slower functional returns. [Orthopedics. 2016; 39(3):e572-e577.]. PMID:27064775

  4. Similar patient-reported outcomes and performance after total knee arthroplasty with or without patellar resurfacing.

    PubMed

    Ali, Abdulemir; Lindstrand, Anders; Nilsdotter, Anna; Sundberg, Martin

    2016-06-01

    Background and purpose - Knee pain after total knee arthroplasty (TKA) is not uncommon. Patellar retention in TKA is one cause of postoperative knee pain, and may lead to secondary addition of a patellar component. Patellar resurfacing in TKA is controversial. Its use ranges from 2% to 90% worldwide. In this randomized study, we compared the outcome after patellar resurfacing and after no resurfacing. Patients and methods - We performed a prospective, randomized study of 74 patients with primary osteoarthritis who underwent a Triathlon CR TKA. The patients were randomized to either patellar resurfacing or no resurfacing. They filled out the VAS pain score and KOOS questionnaires preoperatively, and VAS pain, KOOS, and patient satisfaction 3, 12, and 72 months postoperatively. Physical performance tests were performed preoperatively and 3 months postoperatively. Results - We found similar scores for VAS pain, patient satisfaction, and KOOS 5 subscales at 3, 12, and 72 months postoperatively in the 2 groups. Physical performance tests 3 months postoperatively were also similar in the 2 groups. No secondary resurfacing was performed in the group with no resurfacing during the first 72 months Interpretation - Patellar resurfacing in primary Triathlon CR TKA is of no advantage regarding pain, physical performance, KOOS 5 subscales, or patient satisfaction compared to no resurfacing. None of the patients were reoperated with secondary addition of a patellar component within 6 years. According to these results, routine patellar resurfacing in primary Triathlon TKA appears to be unnecessary. PMID:27212102

  5. Similar patient-reported outcomes and performance after total knee arthroplasty with or without patellar resurfacing

    PubMed Central

    Ali, Abdulemir; Lindstrand, Anders; Nilsdotter, Anna; Sundberg, Martin

    2016-01-01

    Background and purpose Knee pain after total knee arthroplasty (TKA) is not uncommon. Patellar retention in TKA is one cause of postoperative knee pain, and may lead to secondary addition of a patellar component. Patellar resurfacing in TKA is controversial. Its use ranges from 2% to 90% worldwide. In this randomized study, we compared the outcome after patellar resurfacing and after no resurfacing. Patients and methods We performed a prospective, randomized study of 74 patients with primary osteoarthritis who underwent a Triathlon CR TKA. The patients were randomized to either patellar resurfacing or no resurfacing. They filled out the VAS pain score and KOOS questionnaires preoperatively, and VAS pain, KOOS, and patient satisfaction 3, 12, and 72 months postoperatively. Physical performance tests were performed preoperatively and 3 months postoperatively. Results We found similar scores for VAS pain, patient satisfaction, and KOOS 5 subscales at 3, 12, and 72 months postoperatively in the 2 groups. Physical performance tests 3 months postoperatively were also similar in the 2 groups. No secondary resurfacing was performed in the group with no resurfacing during the first 72 months Interpretation Patellar resurfacing in primary Triathlon CR TKA is of no advantage regarding pain, physical performance, KOOS 5 subscales, or patient satisfaction compared to no resurfacing. None of the patients were reoperated with secondary addition of a patellar component within 6 years. According to these results, routine patellar resurfacing in primary Triathlon TKA appears to be unnecessary. PMID:27212102

  6. Web-based patient-reported outcomes in drug safety and risk management: challenges and opportunities?

    PubMed

    Banerjee, Anjan K; Ingate, Simon

    2012-06-01

    Patient-reported outcomes (PROs) from web-based sources are becoming increasingly important, providing opportunities for industry and regulators to understand the benefits and risks of medicines in a real-world context. Although some guidance exists for the use of adverse event (AE) reports from company-sponsored social network sites, this does not cover non-company-sponsored sites. Additionally, there are concerns about the validity of data from social media sources. Techniques for the collection, analysis and reporting of safety data from patients should be defined, and guidelines agreed, to cover PROs and patient-reported adverse drug-related events from more organized sources of patient outcomes. This review considers drivers for web-based PRO adoption in drug safety, the current regulatory framework and potential methodologies, and concludes that there is an urgent unmet need for guidelines on web-based PRO AEs. Stakeholders for the development of any such guidance should include industry, patients, regulators, academic groups and prescribers. PMID:22551007

  7. Setting the vision: Applied patient reported outcomes and smart, connected digital healthcare systems to improve patient-centered outcomes prediction in critical illness

    PubMed Central

    Wysham, Nicholas G.; Abernethy, Amy P.; Cox, Christopher E.

    2014-01-01

    Purpose of review Prediction models in critical illness are generally limited to short-term mortality and uncommonly include patient-centered outcomes. Current outcome prediction tools are also insensitive to individual context or evolution in healthcare practice, potentially limiting their value over time. Improved prognostication of patient-centered outcomes in critical illness could enhance decision making quality in the ICU. Recent Findings Patient-reported outcomes (PROs) have emerged as precise methodological measures of patient-centered variables and have been successfully employed using diverse platforms and technologies, enhancing the value of research in critical illness survivorship and in direct patient care. The learning health system is an emerging ideal characterized by integration of multiple data sources into a smart and interconnected health information technology infrastructure with the goal of rapidly optimizing patient care. We propose a vision of a smart, interconnected learning health system with integrated electronic PROs (ePRO) to optimize patient-centered care including critical care outcome prediction. Summary A learning health system infrastructure integrating ePROs may aid in the management of critical illness associated conditions and yield tools to improve prognostication of patient-centered outcomes in critical illness. PMID:25159475

  8. Psychometric properties of carer-reported outcome measures in palliative care: A systematic review

    PubMed Central

    Michels, Charlotte TJ; Boulton, Mary; Adams, Astrid; Wee, Bee; Peters, Michele

    2016-01-01

    Background: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers’ outcomes is a common problem. Aim: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures’ psychometric properties. Design: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure. Data sources: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts. Results: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care. Conclusion: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required. PMID:26407683

  9. Student Outcomes in Inquiry: Students' Perspectives

    ERIC Educational Resources Information Center

    Saunders-Stewart, K. S.; Gyles, P. D. T.; Shore, B. M.; Bracewell, R. J.

    2015-01-01

    Student outcomes of inquiry-based teaching and learning were explored through student-report. Participants were six teachers and their 181 students in grades 9 through 12. Classes were categorized by level of inquiry (least, middle, and most). A student-administered questionnaire assessed the extent to which the three groups experienced 23…

  10. Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) Perspective in Chronic Kidney Disease: a Midwest Pediatric Nephrology Consortium study

    PubMed Central

    Selewski, David T.; Massengill, Susan F.; Troost, Jonathan P.; Wickman, Larysa; Messer, Kassandra L.; Herreshoff, Emily; Bowers, Corinna; Ferris, Maria E.; Mahan, John D.; Greenbaum, Larry A.; MacHardy, Jackie; Kapur, Gaurav; Chand, Deepa H.; Goebel, Jens; Barletta, Gina Marie; Geary, Denis; Kershaw, David B.; Pan, Cynthia G.; Gbadegesin, Rasheed; Hidalgo, Guillermo; Lane, Jerome C.; Leiser, Jeffrey D.; Song, Peter X.; Thissen, David; Liu, Yang; Gross, Heather E.; DeWalt, Darren A.; Gipson, Debbie S.

    2014-01-01

    Background and Objectives Chronic kidney disease is a persistent chronic health condition commonly seen in pediatric nephrology programs. Our study aims to evaluate the sensitivity of the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric instrument to indicators of disease severity and activity in pediatric chronic kidney disease. Methods This cross sectional study included 233 children 8–17 years old with chronic kidney disease from 16 participating institutions in North America. Disease activity indicators, including hospitalization in the previous 6 months, edema, and number of medications consumed daily, as well as disease severity indicators of kidney function and coexisting medical conditions were captured. PROMIS domains, including depression, anxiety, social-peer relationships, pain interference, fatigue, mobility, and upper extremity function, were administered via web-based questionnaires. Absolute effect sizes (AES) were generated to demonstrate the impact of disease on domain scores. Four children were excluded because of missing GFR estimations. Results 221 of the 229 children included in the final analysis completed the entire PROMIS questionnaire. Unadjusted PROMIS domains were responsive to chronic kidney disease activity indicators and number of coexisting conditions. PROMIS domain scores were worse in the presence of recent hospitalizations (depression AES 0.33, anxiety AES 0.42, pain interference AES 0.46, fatigue AES 0.50, mobility AES 0.49), edema (depression AES 0.50, anxiety AES 0.60, pain interference AES 0.77, mobility AES 0.54) and coexisting medical conditions (social peer-relationships AES 0.66, fatigue AES 0.83, mobility AES 0.60, upper extremity function AES 0.48). Conclusions The PROMIS pediatric domains of depression, anxiety, social-peer relationships, pain interference, and mobility were sensitive to the clinical status of children with chronic kidney disease in this multi-center cross sectional study

  11. Evidence of Deeper Learning Outcomes. Findings from the Study of Deeper Learning Opportunities and Outcomes: Report 3

    ERIC Educational Resources Information Center

    Zeiser, Kristina L.; Taylor, James; Rickles, Jordan; Garet, Michael S.; Segeritz, Michael

    2014-01-01

    The "Study of Deeper Learning: Opportunities and Outcomes"--funded by the William and Flora Hewlett Foundation--aimed to determine whether students attending high schools with a mature and at least moderately well implemented approach to promoting deeper learning actually experienced greater deeper learning opportunities and outcomes…

  12. Race Matters: A Systematic Review of Racial/Ethnic Disparity in Society for Assisted Reproductive Technology (SART) Reported Outcomes

    PubMed Central

    Fujimoto, Victor Y.; Baker, Valerie L.; Barrington, Debbie S.; Broomfield, Diana; Catherino, William H.; Richard-Davis, Gloria; Ryan, Mary; Thornton, Kim; Armstrong, Alicia Y.

    2012-01-01

    Objective To systematically review the reporting of race/ethnicity in SART Clinic Outcome Reporting System (CORS) publications. Design Systematic review using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology of literature published in PUBMED on race/ethnicity that includes data from SART CORS. Setting Systematic review was performed on behalf of the ASRM Health Disparities Special Interest Group. Population IVF cycles reported to SART Exposure Race/ethnicity Main Outcome Measure Any outcomes reported in SART CORS Results Seven publications were identified that assessed racial/ethnic disparities in IVF outcomes using SART data. All reported a racial/ethnic disparity. However, over 35% of cycles were excluded from analysis because of missing race/ethnicity data. Conclusions Review of current publications of SART data suggests significant racial/ethnic disparities in IVF outcomes. However, the potential for selection bias limits confidence in these findings given that fewer than 65% of SART reported cycles include race/ethnicity. Our understanding of how race/ethnicity influences ART outcome could be greatly improved if information on race/ethnicity was available for all reported cycles. PMID:22698638

  13. Transparency of Outcome Reporting and Trial Registration of Randomized Controlled Trials Published in the Journal of Consulting and Clinical Psychology

    PubMed Central

    Azar, Marleine; Riehm, Kira E.; McKay, Dean; Thombs, Brett D.

    2015-01-01

    Background Confidence that randomized controlled trial (RCT) results accurately reflect intervention effectiveness depends on proper trial conduct and the accuracy and completeness of published trial reports. The Journal of Consulting and Clinical Psychology (JCCP) is the primary trials journal amongst American Psychological Association (APA) journals. The objectives of this study were to review RCTs recently published in JCCP to evaluate (1) adequacy of primary outcome analysis definitions; (2) registration status; and, (3) among registered trials, adequacy of outcome registrations. Additionally, we compared results from JCCP to findings from a recent study of top psychosomatic and behavioral medicine journals. Methods Eligible RCTs were published in JCCP in 2013–2014. For each RCT, two investigators independently extracted data on (1) adequacy of outcome analysis definitions in the published report, (2) whether the RCT was registered prior to enrolling patients, and (3) adequacy of outcome registration. Results Of 70 RCTs reviewed, 12 (17.1%) adequately defined primary or secondary outcome analyses, whereas 58 (82.3%) had multiple primary outcome analyses without statistical adjustment or undefined outcome analyses. There were 39 (55.7%) registered trials. Only two trials registered prior to patient enrollment with a single primary outcome variable and time point of assessment. However, in one of the two trials, registered and published outcomes were discrepant. No studies were adequately registered as per Standard Protocol Items: Recommendation for Interventional Trials guidelines. Compared to psychosomatic and behavioral medicine journals, the proportion of published trials with adequate outcome analysis declarations was significantly lower in JCCP (17.1% versus 32.9%; p = 0.029). The proportion of registered trials in JCCP (55.7%) was comparable to behavioral medicine journals (52.6%; p = 0.709). Conclusions The quality of published outcome analysis

  14. Patient-reported outcomes of cancer survivors in England 1–5 years after diagnosis: a cross-sectional survey

    PubMed Central

    Glaser, Adam W; Fraser, Lorna K; Corner, Jessica; Feltbower, Richard; Morris, Eva J A; Hartwell, Greg; Richards, Mike

    2013-01-01

    Objectives To determine the feasibility of collecting population-based patient-reported outcome measures (PROMs) in assessing quality of life (QoL) to inform the development of a national PROMs programme for cancer and to begin to describe outcomes in a UK cohort of survivors. Design Cross-sectional postal survey of cancer survivors using a population-based sampling approach. Setting English National Health Service. Participants 4992 breast, colorectal, prostate and non-Hodgkin's lymphoma (NHL) survivors 1–5 years from diagnosis. Primary and secondary outcome measures Implementation issues, response rates, cancer-specific morbidities utilising items including the EQ5D, tumour-specific subscales of the Functional Assessment of Cancer Therapy and Social Difficulties Inventory. Results 3300 (66%) survivors returned completed questionnaires. The majority aged 85+ years did not respond and the response rates were lower for those from more deprived area. Response rates did not differ by gender, time since diagnosis or cancer type. The presence of one or more long-term conditions was associated with significantly lower QoL scores. Individuals from most deprived areas reported lower QoL scores and poorer outcomes on other measures, as did those self-reporting recurrent disease or uncertainty about disease status. QoL scores were comparable at all time points for all cancers except NHL. QoL scores were lower than those from the general population in Health Survey for England (2008) and General Practice Patient Survey (2012). 47% of patients reported fear of recurrence, while 20% reported moderate or severe difficulties with mobility or usual activities. Bowel and urinary problems were common among colorectal and prostate patients. Poor bowel and bladder control were significantly associated with lower QoL. Conclusions This method of assessing QoL of cancer survivors is feasible and acceptable to most survivors. Routine collection of national population-based PROMs will

  15. Cross-cultural adaptation and validation of the self-reporting questionnaire among HIV+ individuals in a rural ART program in southern Uganda

    PubMed Central

    Nakimuli-Mpungu, Etheldreda; Mojtabai, Ramin; Alexandre, Pierre K; Katabira, Elly; Musisi, Seggane; Nachega, Jean B; Bass, Judith K

    2012-01-01

    Background HIV treatment programs are in need of brief, valid instruments to identify common mental disorders such as depression. Aim To translate and culturally adapt the Self-Reporting Questionnaire (SRQ-20) for use in Uganda and to investigate its psychometric properties in this setting. Methods Following an initial translation of the SRQ-20 from English to Luganda, key informant interviews and focus-group discussions were used to produce a culturally adapted version of the instrument. The adapted SRQ-20 was administered to 200 HIV-positive individuals in a rural antiretroviral therapy program in southern Uganda. All study participants were also evaluated by a psychiatric clinical officer with the Mini International Neuropsychiatric Interview (MINI). Receiver-operating-characteristic analysis was used to examine the sensitivity and specificity of the SRQ-20 compared to the clinical diagnosis generated by the MINI. Results The prevalence estimates of any depressive disorder and current depression were 24% (n = 48) and 12% (n = 24), respectively. The SRQ-20 scores discriminated well between subjects with and without current depression based on the MINI, with an area under the curve of 0.92, as well as between subjects with and without any current or past depressive disorder, with an area under the curve of 0.75. A score of 6 or more had 84% sensitivity and 93% specificity for current depression, and 75% sensitivity and 90% specificity for any depressive disorder. Conclusion The SRQ-20 appears to be a reliable and valid screening measure for depression among rural HIV-positive individuals in southern Uganda. The use of this screening instrument can potentially improve detection and management of depression in this setting. PMID:22570575

  16. The Koala Fear Questionnaire: a standardized self-report scale for assessing fears and fearfulness in pre-school and primary school children.

    PubMed

    Muris, Peter; Meesters, Cor; Mayer, Birgit; Bogie, Nicole; Luijten, Monique; Geebelen, Elke; Bessems, Judith; Smit, Carelijn

    2003-05-01

    The Koala Fear Questionnaire (KFQ) is a standardized self-report scale for assessing fears and fearfulness in children aged between 4 and 12 years. The current article presents six studies which examined the reliability and validity of the KFQ. Study 1 (N=108) demonstrated that the visual fear scales of Koala bears as employed in the KFQ are highly comparable to the standard 3-point scales that are used in other childhood fear measures. Study 2 (N=163) provided support for the convergent validity of the KFQ in a sample of 8- to 14-year-old children. That is, the scale correlated substantially with alternative measures of childhood fear and anxiety. Study 3 (N=189) showed that the KFQ possesses good internal consistency and test-retest stability in a group of 8- to 11-year-old children. The results of Studies 4 (N=129) and 5 (N=176) indicated that the KFQ is suitable for children aged 4 to 6 years and demonstrated that the psychometric properties of the scale in younger children are highly similar to those obtained in older children. Study 6 (N=926) showed that the factor structure of the KFQ was theoretically meaningful: although the data clearly pointed in the direction of one factor of general fearfulness, spurs of the commonly found five-factor solution of childhood fear were found in the KFQ. Altogether, the KFQ seems to be a valuable addition to the instrumentarium of clinicians and researchers who are working with fearful and anxious children. PMID:12711267

  17. Patient-reported satisfaction and cosmesis outcomes following laparoscopic adrenalectomy: Laparoendoscopic single-site adrenalectomy vs. conventional laparoscopic adrenalectomy

    PubMed Central

    Inoue, Shogo; Ikeda, Kenichiro; Kobayashi, Kanao; Kajiwara, Mitsuru; Teishima, Jun; Matsubara, Akio

    2014-01-01

    Introduction: We evaluate patient-reported satisfaction and cosmesis of laparoendoscopic single-site adrenalectomy (LESS-A) in comparison with that of conventional laparoscopic adrenalectomy (CLA). Methods: A total of 19 and 104 patients who respectively underwent LESS-A and CLA between May 1996 and June 2011 were included in the study. Questionnaires inquiring about scar pain (0: not painful, 10: very painful), satisfaction (0: not satisfied, 10: very satisfied) and cosmesis (0: very unsightly, 10: very beautiful) on the basis of a visual analogue scale were sent to patients postoperatively. Results: The respondents consisted of 11 and 54 patients who underwent LESS-A and CLA, respectively. There was no significant inter-group difference in age, sex, affected side or body mass index. No significant differences were observed in operative time or estimated blood loss. There were also no significant differences in pain (0.67 vs. 0.57, p = 0.393), satisfaction (8.92 vs. 8.46, p = 0.453), or cosmesis score (8.58 vs. 8.00, p = 0.487) between the LESS-A and CLA groups overall. In female patients, the satisfaction score was significantly higher in the LESS-A group than in the CLA group (10.0 vs. 8.72, p = 0.049). In young patients (<50 years old), the satisfaction score was also significantly higher in the LESS-A group than in the CLA group (9.17 vs. 6.38, p = 0.036). Conclusions: Young patients and female patients who had received LESS-A adrenal surgery were more satisfied with the scar outcomes than were the young patients and female patients who had received CLA. We suggest that this patient subset most values the cosmetic benefits of LESS-A. PMID:24454596

  18. Understanding the Recovery Phase of Breast Reconstructions: Patient Reported Outcomes Correlated to Type and Timing of Reconstruction

    PubMed Central

    Weichman, Katie E.; Hamill, Jennifer B.; Kim, Hyungjin Myra; Chen, Xiaoxue; Wilkins, Edwin G.; Pusic, Andrea L.

    2016-01-01

    Summary Introduction During preoperative discussions with breast reconstruction patients, questions often arise about what to expect during the recovery period. However, there is a paucity of data elucidating post breast reconstruction pain, fatigue and physical morbidity. This information is important to patient and physician understanding of reconstructive choices and the postoperative recovery process. We sought to evaluate how recovery may vary for patients based on the timing and type of reconstruction. Materials and Methods Patients were recruited as part of the Mastectomy Reconstruction Outcomes Consortium (MROC) Study, a prospective, multi-centered NIH-funded study (1RO1CA152192). Here, patients completed the Numerical Pain Rating Scale (NPRS), McGill Pain Questionnaire, and Breast-Q preoperatively and at one week and three months postoperatively. Pain, fatigue, and upper body morbidity were evaluated by type and timing of reconstruction. Results A total of 2,013 MROC study participants had completed 3-month follow-up and therefore were included for analysis. 1,583 patients (78.6%) completed surveys at one-week post-reconstruction, 1,517 patients (75.3%) at three months post-reconstruction. Across all procedure groups, fatigue and physical well-being scores did not return to preoperative levels by three months. At three months, pain measured by the NPRS differed across procedure types (p=0.01), with tissue expander/implant (TE/I) having more pain than direct to implant (p<0.01). Similarly, at three months, chest and upper body physical morbidity, as measured by BREAST-Q, differed by procedure types (p<0.001), with generally less morbidity for autologous reconstruction as compared to TE/Is. Conclusions For all reconstructive procedure groups, patients have not fully recovered at three months post-surgery. Additionally, postoperative pain and upper body physical morbidity vary significantly by reconstructive procedure with patients undergoing TE/I reporting

  19. Self-Reported Parental Exposure to Pesticide during Pregnancy and Birth Outcomes: The MecoExpo Cohort Study

    PubMed Central

    Mayhoub, Flora; Berton, Thierry; Bach, Véronique; Tack, Karine; Deguines, Caroline; Floch-Barneaud, Adeline; Desmots, Sophie; Stéphan-Blanchard, Erwan; Chardon, Karen

    2014-01-01

    The MecoExpo study was performed in the Picardy region of northern France, in order to investigate the putative relationship between parental exposures to pesticides (as reported by the mother) on one hand and neonatal parameters on the other. The cohort comprised 993 mother-newborn pairs. Each mother completed a questionnaire that probed occupational, domestic, environmental and dietary sources of parental exposure to pesticides during her pregnancy. Multivariate regression analyses were then used to test for associations between the characteristics of parental pesticide exposure during pregnancy and the corresponding birth outcomes. Maternal occupational exposure was associated with an elevated risk of low birth weight (odds ratio (OR) [95% confidence interval]: 4.2 [1.2, 15.4]). Paternal occupational exposure to pesticides was associated with a lower than average gestational age at birth (−0.7 weeks; p = 0.0002) and an elevated risk of prematurity (OR: 3.7 [1.4, 9.7]). Levels of domestic exposure to veterinary antiparasitics and to pesticides for indoor plants were both associated with a low birth weight (−70 g; p = 0.02 and −160 g; p = 0.005, respectively). Babies born to women living in urban areas had a lower birth length and a higher risk of low birth length (−0.4 cm, p = 0.006 and OR: 2.9 [1.5, 5.5], respectively). The present study results mainly demonstrate a negative correlation between fetal development on one hand and parental occupational and domestic exposure to pesticides on the other. Our study highlights the need to perform a global and detailed screening of all potential physiological effects when assessing in utero exposure to pesticides. PMID:24949871

  20. Psychometric Characteristics of a Patient Reported Outcome Measure on Ego-Integrity and Despair among Cancer Patients

    PubMed Central

    Kleijn, Gitta; Post, Lenneke; Witte, Birgit I.; Bohlmeijer, Ernst T.; Westerhof, Gerben J.; Cuijpers, Pim; Verdonck-de Leeuw, Irma M.

    2016-01-01

    Purpose To evaluate psychometric characteristics of a questionnaire (the Northwestern Ego-integrity Scale (NEIS)) on ego-integrity (the experience of wholeness and meaning in life, even in spite of negative experiences) and despair (the experience of regret about the life one has led, and feelings of sadness, failure and hopelessness) among cancer patients. Methods Cancer patients (n = 164) completed patient reported outcome measures on ego-integrity and despair (NEIS), psychological distress, anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), and quality of life (EORTC QLQ-C30 (cancer survivors, n = 57) or EORTC QLQ-C15-PAL (advanced cancer patients, n = 107)). Confirmatory Factor Analysis was used to assess construct validity. Cronbach’s alpha was used to assess internal consistency. Convergent validity was tested based on a priori defined hypotheses: a higher level of ego-integrity was expected to be related to a higher level of quality of life, and lower levels of distress, depression and anxiety; a higher level of despair was expected to be related to a lower level of quality of life, and higher levels of distress, depression and anxiety. Results The majority of all items (94.5%) of the NEIS were completed by patients and single item missing rate was below 2%. The two subscales, labeled as Ego-integrity (5 items) and Despair (4 items) had acceptable internal consistency (Cronbach’s alpha .72 and .61, respectively). The Ego-integrity subscale was not significantly associated with quality of life, distress, anxiety, or depression. The Despair subscale correlated significantly (p <.001) with quality of life (r = -.29), distress (r = .44), anxiety (r = .47) and depression (r = .32). Conclusion The NEIS has good psychometric characteristics to assess ego-integrity and despair among cancer patients. PMID:27195750

  1. Validation of a questionnaire measuring the regulation of autonomic function

    PubMed Central

    Kröz, M; Feder, G; von Laue, HB; Zerm, R; Reif, M; Girke, M; Matthes, H; Gutenbrunner, C; Heckmann, C

    2008-01-01

    Background To broaden the range of outcomes that we can measure for patients undergoing treatment for oncological and other chronic conditions, we aimed to validate a questionnaire measuring self-reported autonomic regulation (aR), i.e. to characterise a subject's autonomic functioning by questions on sleeping and waking, vertigo, morningness-eveningness, thermoregulation, perspiration, bowel movements and digestion. Methods We administered the questionnaire to 440 participants (♀: N = 316, ♂: N = 124): 95 patients with breast cancer, 49 with colorectal cancer, 60 with diabetes mellitus, 39 with coronary heart disease, 28 with rheumatological conditions, 32 with Hashimoto's disease, 22 with multiple morbidities and 115 healthy people. We administered the questionnaire a second time to 50.2% of the participants. External convergence criteria included the German version of the Hospital Anxiety and Depression Scale (HADS-D), a short questionnaire on morningness-eveningness, the Herdecke Quality of Life Questionnaire (HLQ) and a short version questionnaire on self-regulation. Results A principal component analysis yielded a three dimensional 18-item inventory of aR. The subscales orthostatic-circulatory, rest/activity and digestive regulation had internal consistency (Cronbach-α: rα = 0.65 – 0.75) and test-retest reliability (rrt = 0.70 – 85). AR was negatively associated with anxiety, depression, and dysmenorrhoea but positively correlated to HLQ, self-regulation and in part to morningness (except digestive aR) (0.49 – 0.13, all p < 0.05). Conclusion An internal validation of the long-version scale of aR yielded consistent relationships with health versus illness, quality of life and personality. Further studies are required to clarify the issues of external validity, clinical and physiological relevance. PMID:18533043

  2. Patient-reported outcomes as end points in clinical trials in rheumatoid arthritis

    PubMed Central

    Gossec, Laure; Dougados, Maxime; Dixon, William

    2015-01-01

    There is a growing interest in patient-reported outcomes (PROs) in rheumatology, which goes with a global trend for more ‘patient-centred care’. This review considers the use of PROs in trials, including their strengths and limitations. In rheumatoid arthritis (RA) trials, the most frequently used PROs to assess treatments include pain, patient global assessment, assessment of functional status, but also health-related quality of life and less commonly fatigue. Other aspects of importance for patients, such as sleep, psychological well-being or ability to cope, are rarely assessed. PROs as outcome measures in RA trials have strengths as well as limitations. PROs have face validity, they are reproducible and sensitive to change and they bring additional information beyond joint counts or acute phase reactants. However, their predictive validity for later outcomes has been little explored, some PROs show redundancy (they bring similar information) and, due to the apparently moderate link between some PROs such as fatigue and the disease process, the use of some PROs to inform treatment choices has been questioned. We suggest the choice of PROs for trials depends on the study objective and on the viewpoint of the stakeholder. There needs to be agreed prioritisation across all stakeholders about what is most important to collect in a trial, which is why a prioritisation and selection process is necessary. Trials in RA will continue to include PROs and their interpretation will become easier as our knowledge progresses. PMID:26509052

  3. Patient-Reported Outcome Measures-What Data Do We Really Need?

    PubMed

    Lyman, Stephen; Hidaka, Chisa

    2016-06-01

    The Center for Medicaid and Medicare Services has recently announced the inclusion of several patient-reported outcome measures (PROMs), including the abbreviated Hip Disability and Osteoarthritis Outcome Score and Knee Injury and Osteoarthritis Outcome Score for joint replacement (HOOS, JR and KOOS, JR) for the purpose of quality assessment in total hip and total knee replacement (THR and TKR). Historically, Center for Medicaid and Medicare Services and other agencies have used measures of process (eg, % vaccinated) or adverse events (eg, infection rates, readmission rates) for quality assessment. However, the use of PROMs has become a priority based on stated goals by the National Quality Strategy and Institute of Medicine for a more patient-centered approach. Here, we review several general health and joint-specific PROMs, which have been extensively used in research to assess treatment efficacy and discuss their relevance to the new criteria for quality assessment, particularly for THR and TKR. Although we expect HOOS, JR and KOOS, JR to yield much useful information in the near term, these surveys are likely an interim solution. In the future, we anticipate that novel measurement platforms, such as wearable technologies or patient-specific surveys, may open new and exciting avenues of research to discover which types of data-perhaps not previously available-best represent patient quality of life and satisfaction after THR, TKR, or other orthopedic procedures. PMID:27157278

  4. Challenges and Opportunities in Using Patient-reported Outcomes in Quality Measurement in Rheumatology.

    PubMed

    Wahl, Elizabeth R; Yazdany, Jinoos

    2016-05-01

    Use of patient-reported outcome measures (PROs) in rheumatology research is widespread, but use of PRO data to evaluate the quality of rheumatologic care delivered is less well established. This article reviews the use of PROs in assessing health care quality, and highlights challenges and opportunities specific to their use in rheumatology quality measurement. It first explores other countries' experiences collecting and evaluating national PRO data to assess quality of care. It describes the current use of PROs as quality measures in rheumatology, and frames an agenda for future work supporting development of meaningful quality measures based on PROs. PMID:27133495

  5. Brief Report of Preliminary Outcomes of an Emotion Regulation Intervention for Children with Autism Spectrum Disorder.

    PubMed

    Thomson, Kendra; Burnham Riosa, Priscilla; Weiss, Jonathan A

    2015-11-01

    Children with autism spectrum disorder (ASD) often present with comorbid psychopathology including problems with emotion regulation. The goal of the present research was to investigate the feasibility of a multicomponent manualized cognitive behavior therapy treatment program for improving emotion regulation in youth with ASD 8-12 years of age. Thirteen males and their parents participated in the intervention, reporting high satisfaction with the activities and program overall, and attending all sessions. Preliminary outcomes regarding emotion regulation and psychopathology, and feasibility of the intervention, are summarized and discussed. PMID:25877014

  6. Characteristics and outcome of living kidney donors after donation: A report from Cote d'Ivoire.

    PubMed

    Lagou, Delphine Amélie; Ackoundou-N'guessan, Kan Clément; Njapom, Tchakam Léopold; Sekongo, Yassongui Mamadou; Guei, Cyr Monley; Tia, Mélanie Weu; Gnionsahe, Daze Apollinaire

    2016-05-01

    Kidney transplantation from living kidney donors (LKDs) because of its good results represents a good option for the treatment of patients with the end-stage renal disease. Kidney donation is a relatively safe procedure according to several studies. We conducted this cross-sectional study in order to describe the demographic, clinical, and renal outcome of LKD in Côte d'Ivoire. From March to November 2014, LKD residing in Côte d'Ivoire at the time of investigation and having donated the kidney more than one year ago were considered for the study. They were evaluated through a questionnaire. Of the 29 LKD listed in Côte d'Ivoire, only 14 responded to the questionnaire. The mean age at donation was 43.29 ± 9.12 years (27-59) and 10 of the LKD were women. Eight were related to the recipients, and the remaining were spouses. Laparoscopic nephrectomy was performed in nine LKD. The left kidney was harvested in ten cases. The main motivation for donation in all donors was the desire to save a life. At the time of the survey, the average duration after the donation was 4.57 ± 2.56 years (1-8). Only five donors had a regular nephrological follow-up. Hypertension was observed in one donor, seven had significant proteinuria, and six had glomerular filtration rate <60 mL/min but >30 mL/min. Significantly higher proteinuria was noted in donors under 45 years as compared to those over 45 years (0.43 ± 0.17 g/24 h vs. 0.22 ± 0.03 g/24 h, P = 0.01). Our study suggests that renal disease in LKD in Côte d'Ivoire is low after a mean follow-up period of four years. A donor registry is essential to ensure better follow-up of donors in order to detect potential adverse effects of kidney donation in the medium as well as in the long-term. PMID:27215251

  7. Financial Hardship and Patient-Reported Outcomes after Hematopoietic Cell Transplantation.

    PubMed

    Abel, Gregory A; Albelda, Randy; Khera, Nandita; Hahn, Theresa; Salas Coronado, Diana Y; Odejide, Oreofe O; Bona, Kira; Tucker-Seeley, Reginald; Soiffer, Robert

    2016-08-01

    Although hematopoietic cell transplantation (HCT) is the only curative therapy for many advanced hematologic cancers, little is known about the financial hardship experienced by HCT patients nor the association of hardship with patient-reported outcomes. We mailed a 43-item survey to adult patients approximately 180 days after their first autologous or allogeneic HCT at 3 high-volume centers. We assessed decreases in household income; difficulty with HCT-related costs, such as need to relocate or travel; and 2 types of hardship: hardship_1 (reporting 1 or 2 of the following: dissatisfaction with present finances, difficulty meeting monthly bill payments, or not having enough money at the end of the month) and "hardship_2" (reporting all 3). Patient-reported stress was measured with the Perceived Stress Scale-4, and 7-point scales were provided for perceptions of overall quality of life (QOL) and health. In total, 325 of 499 surveys (65.1%) were received. The median days since HCT was 173; 47% underwent an allogeneic HCT, 60% were male, 51% were > 60 years old, and 92% were white. Overall, 46% reported income decline after HCT, 56% reported hardship_1, and 15% reported hardship_2. In multivariable models controlling for income, those reporting difficulty paying for HCT-related costs were more likely to report financial hardship (odds ratio, 6.9; 95% confidence interval, 3.8 to 12.3). Hardship_1 was associated with QOL below the median (odds ratio, 2.9; 95% confidence interval, 1.7 to 4.9), health status below the median (odds ratio, 2.2; 95% confidence interval, 1.3 to 3.6), and stress above the median (odds ratio, 2.1; 95% confidence interval, 1.3 to 3.5). In this sizable cohort of HCT patients, financial hardship was prevalent and associated with worse QOL and higher levels of perceived stress. Interventions to address patient financial hardship-especially those that ameliorate HCT-specific costs-are likely to improve patient-reported outcomes. PMID:27184627

  8. Information on actual medication use and drug-related problems in older patients: questionnaire or interview?

    PubMed

    Willeboordse, Floor; Grundeken, Lucienne H; van den Eijkel, Lisanne P; Schellevis, François G; Elders, Petra J M; Hugtenburg, Jacqueline G

    2016-04-01

    Background Information on medication use and drug-related problems is important in the preparation of clinical medication reviews. Critical information can only be provided by patients themselves, but interviewing patients is time-consuming. Alternatively, patient information could be obtained with a questionnaire. Objective In this study the agreement between patient information on medication use and drug-related problems in older patients obtained with a questionnaire was compared with information obtained during an interview. Setting General practice in The Netherlands. Method A questionnaire was developed to obtain information on actual medication use and drug-related problems. Two patient groups ≥65 years were selected based on general practitioner electronic medical records in nine practices; I. polypharmacy and II. ≥1 predefined general geriatric problems. Eligible patients were asked to complete the questionnaire and were interviewed afterwards. Main outcome measure Agreement on information on medication use and drug-related problems collected with the questionnaire and interview was calculated. Results Ninety-seven patients participated. Of all medications used, 87.6 % (95 % CI 84.7-90.5) was reported identically in the questionnaire and interview. Agreement for the complete medication list was found for 45.4 % (95 % CI 35.8-55.3) of the patients. On drug-related problem level, agreement between questionnaire and interview was 75 %. Agreement tended to be lower in vulnerable patients characterized by ≥4 chronic diseases, ≥10 medications used and low health literacy. Conclusion Information from a questionnaire showed reasonable agreement compared with interviewing. The patients reported more medications and drug-related problems in the interview than the questionnaire. Taking the limitations into account, a questionnaire seems a suitable tool for medication reviews that may replace an interview for most patients. PMID:26830412

  9. Development of a Questionnaire to Investigate Study Design Factors Influencing Participation in Gait Rehabilitation Research by People with Stroke: A Brief Report

    PubMed Central

    Gallant, Nicole; Ormiston, Tracey; Patience, Chad; Whitechurch, Mandy; Mansfield, Avril; Brown, Janet

    2015-01-01

    ABSTRACT Purpose: The main objective of this study was to evaluate the feasibility of a newly developed questionnaire to assess the influence of study design on participation in gait rehabilitation research in a pilot test with individuals with stroke. A secondary objective was to investigate the relationship between participation in gait rehabilitation research and social and clinical factors of interest after stroke. Methods: A questionnaire was developed with expert opinion and guidance from related previous research. The questionnaire was pilot tested in a group of 21 people with stroke, and social and clinical factors (including gait function) were collected. Gait function was assessed using a pressure-sensitive mat; social and clinical characteristics were extracted from patient charts. Correlations were performed to investigate relationships between questionnaire responses and gait function, motor impairment, and chronicity; t-tests were used to examine response differences between people with a caregiver at home and those without. Results: A total of 21 people with stroke completed the questionnaire without difficulty; mean completion time was 7.2 (SD 3.5) minutes, with a range of responses across participants. Borderline significant associations were found between gait function and the number of studies in which a person would participate and between stroke chronicity and the location of studies in which a person would participate. Conclusions: A questionnaire to investigate the influence of study design factors on participation in rehabilitation research is feasible for administration in the post-stroke population and has potential to inform the design of future studies. PMID:26839450

  10. Transparency and Public Reporting of Pediatric and Congenital Heart Surgery Outcomes in North America.

    PubMed

    Jacobs, Jeffrey P; Jacobs, Marshall L

    2016-01-01

    Health care is embarking on a new era of increased transparency. In January 2015, the Society of Thoracic Surgeons (STS) began to publicly report outcomes of pediatric and congenital cardiac surgery using the 2014 Society of Thoracic Surgeons Congenital Heart Surgery Database (STS CHSD) Mortality Risk Model. Because the 2014 STS CHSD Mortality Risk Model adjusts for procedural factors and patient-level factors, it is critical that centers are aware of the important impact of incomplete entry of data in the fields for patient-level factors. These factors are used to estimate expected mortality, and incomplete coding of these factors can lead to inaccurate assessment of case mix and estimation of expected mortality. In order to assure an accurate assessment of case mix and estimate of expected mortality, it is critical to assure accurate completion of the fields for patient factors, including preoperative factors. It is crucial to document variables such as whether the patient was preoperatively ventilated or had an important noncardiac congenital anatomic abnormality. The lack of entry of these variables will lead to an underestimation of expected mortality. The art and science of assessing outcomes of pediatric and congenital cardiac surgery continues to evolve. In the future, when models have been developed that encompass other outcomes in addition to mortality, pediatric and congenital cardiac surgical performance may be able to be assessed using a multidomain composite metric that incorporates both mortality and morbidity, adjusting for the operation performed and for patient-specific factors. It is our expectation that in the future, this information will also be publicly reported. In this era of increased transparency, the complete and accurate coding of both patient-level factors and procedure-level factors is critical. PMID:26714994

  11. The Daily Activity Report (DAR) a Novel Measure of Functional Outcome for Serious Mental Illness.

    PubMed

    Velligan, Dawn I; Mintz, Jim; Sierra, Cynthia; Martin, Mona L; Fredrick, Megan; Maglinte, Gregory A; Corey-Lisle, Patricia K

    2016-05-01

    The assessment of real-world functional outcomes in clinical trials for medications targeting negative symptoms and cognitive impairment is extremely important. We tested the psychometric properties of the Daily Activity Report (DAR), a novel assessment of productive daily activity. We administered the DAR and additional assessments of functional outcome, functional capacity, cognition and symptomatology to 50 individuals with schizophrenia at 2 time points, 1 month apart and to 25 healthy controls. The DAR records a person's daily activity for 7 consecutive days based upon phone calls made 3 times a day. A total score and scores in 3 domains; instrumental activities (ie, independent living), social and work or school related activities are generated for the DAR. Inter-item consistency was high 0.89-0.94 for each domain and 0.88 overall. Test-retest reliability across 1 month for the total DAR score was 0.67,P< .0001. The total DAR score as well as scores for social activity and nondomestic work/school differed significantly between control and patient participants (P< .0001). DAR domain scores were associated with negative symptoms and functional outcomes, but the primary score related to these measures was the work/school dimension of the DAR. DAR scores were only weakly and nonsignificantly related to positive symptoms. This study provides preliminary support for the reliability and validity of the DAR using interviewer administration. The development of a patient reported version of the DAR using smart phone technology with automatic scoring is the next step. PMID:26712856

  12. Prediction of Patient-Reported Outcome After Single-Bundle ACL Reconstruction

    PubMed Central

    Kowalchuk, Deborah A.; Harner, Christopher D.; Fu, Freddie H.; Irrgang, James J.

    2010-01-01

    Purpose To identify pre-operative and intra-operative factors that predict patient-oriented outcome as measured by the IKDC Subjective Knee Form after ACL reconstruction. Methods We identified 402 subjects who had undergone primary single-bundle arthroscopic ACL reconstruction at a mean follow-up of 6.3 years (range 2-15 years). The International Knee Documentation Committee Subjective Knee Form (IKDC) was used to measure patient-reported outcome and was dichotomized as above or below the patient-specific age and gender matched population average. Potential predictor variables included subject demographics, activity level prior to surgery, previous meniscectomy, and surgical variables. Multivariate logistic regression analysis was performed to identify the best subset of predictors for determining the likelihood that the IKDC score was better than the age- and sex-matched population average. Results The dichotomized IKDC score was associated with BMI, smoking status, education, previous medial meniscectomy, and medial chondrosis at the time of ACL reconstruction. The multivariate model containing only factors known before surgery included BMI and smoking status. Subjects with a BMI > 30 had 0.35 times the odds of success than subjects with a normal BMI. Subjects who smoked had 0.36 times the odds of success as subjects who did not smoke. A model including medial chondrosis at the time of surgery had a slightly higher discriminatory power (area under the ROC curve 0.65 versus 0.61) and negative predictive value (71.4 versus 60.0), but similar positive predictive power (86.3 versus 85.9). Conclusions Lower patient-reported outcome following ACL reconstruction was strongly associated with obesity, smoking, and severe chondrosis at time of surgery. PMID:19409302

  13. Development and Validation of the Keele Musculoskeletal Patient Reported Outcome Measure (MSK-PROM)

    PubMed Central

    2015-01-01

    Objective To develop and validate a patient report outcome measure (PROM) for clinical practice that can monitor health status of patients with a range of musculoskeletal (MSK) disorders. Methods Constructs for inclusion in the MSK-PROM were identified from a consensus process involving patients with musculoskeletal conditions, clinicians, purchasers of healthcare services, and primary care researchers. Psychometric properties of the brief tool, including face and construct validity, repeatability and responsiveness were assessed in a sample of patients with musculoskeletal pain consulting physiotherapy services in the United Kingdom (n=425). Results The consensus process identified 10 prioritised domains for monitoring musculoskeletal health status: pain intensity, quality of life, physical capacity, interference with social/leisure activities, emotional well-being, severity of most difficult thing, activities and roles, understanding independence, and overall impact. As the EuroQol (EQ-5D-5L) is a widely adopted PROMs tool and covers the first four domains listed, to reduce patient burden to a minimum the MSK-PROM was designed to capture the remaining six prioritised domains which are not measured by the EQ-5D-5L. The tool demonstrated excellent reliability, construct validity, responsiveness and acceptability to patients and clinicians for use in clinical practice. Conclusion We have validated a brief patient reported outcome measure (MSK-PROM) for use in clinical practice to measure musculoskeletal health status and monitor outcomes over time using domains that are meaningful to patients and sensitive to change. Further work will establish whether the MSK-PROM is useful in other musculoskeletal healthcare settings. PMID:25928807

  14. The Daily Activity Report (DAR) a Novel Measure of Functional Outcome for Serious Mental Illness

    PubMed Central

    Velligan, Dawn I.; Mintz, Jim; Sierra, Cynthia; Martin, Mona L.; Fredrick, Megan; Maglinte, Gregory A.; Corey-Lisle, Patricia K.

    2016-01-01

    The assessment of real-world functional outcomes in clinical trials for medications targeting negative symptoms and cognitive impairment is extremely important. We tested the psychometric properties of the Daily Activity Report (DAR), a novel assessment of productive daily activity. We administered the DAR and additional assessments of functional outcome, functional capacity, cognition and symptomatology to 50 individuals with schizophrenia at 2 time points, 1 month apart and to 25 healthy controls. The DAR records a person’s daily activity for 7 consecutive days based upon phone calls made 3 times a day. A total score and scores in 3 domains; instrumental activities (ie, independent living), social and work or school related activities are generated for the DAR. Inter-item consistency was high 0.89–0.94 for each domain and 0.88 overall. Test–retest reliability across 1 month for the total DAR score was 0.67, P < .0001. The total DAR score as well as scores for social activity and nondomestic work/school differed significantly between control and patient participants (P < .0001). DAR domain scores were associated with negative symptoms and functional outcomes, but the primary score related to these measures was the work/school dimension of the DAR. DAR scores were only weakly and nonsignificantly related to positive symptoms. This study provides preliminary support for the reliability and validity of the DAR using interviewer administration. The development of a patient reported version of the DAR using smart phone technology with automatic scoring is the next step. PMID:26712856

  15. Birmingham Hip Resurfacing--Patient reported outcomes pre and post 'Metal-on-Metal' media attention.

    PubMed

    Barke, Samuel; Malagelada, Francesc; Stafford, Giles; McMinn, Derek; Field, Richard

    2016-03-01

    We have investigated whether patient reported outcomes provided by patients with Birmingham Hip Resurfacing (BHR) changed after negative media coverage of metal-on-metal (MOM) hip replacement. We also investigated whether patients whose procedures were performed by a designer surgeon behaved differently to those performed elsewhere. 1178 consecutive BHR procedures performed between January 2002 and December 2006, by one of the designer surgeons in his private practice, were reviewed. We also reviewed 402 BHRs undertaken by two non-designer surgeons in both their NHS and private practice. 150 of the latter cohort were undertaken at an NHS hospital and 252 at an independent private hospital. All patients had annual Oxford Hip Scores (OHS) collected. We chose 2007 as pre-"media attention" and compared scores from this year against subsequent years. We found no clinically significant change in OHS between 2007 and subsequent years, at all centres. We conclude that negative media reporting does not appear to have had an impact on patients' perceived outcome after BHR. In consequence, patients who have undergone this type of hip resurfacing and show deterioration should be investigated. PMID:26984649

  16. Underlying diagnosis predicts patient-reported outcomes after revision total knee arthroplasty

    PubMed Central

    Lewallen, David G.

    2014-01-01

    Objective. To assess the association of underlying diagnosis with outcomes after revision total knee arthroplasty (TKA). Methods. For this cohort study we used prospectively collected data from the Mayo Clinic Total Joint Registry on all revision TKA patients from 1993 to 2005 with 2- or 5-year response to a validated knee questionnaire that assesses pain and function. We used logistic regression to assess the odds of moderate–severe activities of daily living (ADL) limitations and moderate–severe index knee pain 2 and 5 years after revision TKA. Odds ratios (ORs) and 95% CIs are presented. Results. The underlying diagnosis for the 2- and 5-year cohorts was loosening, wear or osteolysis in 73% and 75%; dislocation, bone or prosthesis fracture, instability or non-union in 17% and 15%; and failed prior arthroplasty with components removed or infection in 11% and 11%, respectively. In multivariable adjusted analyses that included preoperative status, compared with patients with loosening/wear/osteolysis, patients with dislocation/fracture/instability/non-union had an OR of 2.1 for moderate–severe ADL limitation (95% CI 1.3, 3.1, P < 0.001) and those with failed prior arthroplasty/infection had an OR of 1.1 (95% CI 0.6, 1.8, P = 0.4). At 5 years, differences were no longer significant. In multivariable adjusted analyses, compared with patients with loosening/wear/osteolysis, patients with dislocation/fracture/instability/non-union had an OR of 2.0 for moderate–severe pain (95% CI 1.3, 3.1, P < 0.01) at 2 years and an OR of 2.1 (95% CI 1.3, 3.8, P = 0.01) at 5 years. Failed prior arthroplasty/infection was not significantly different than the reference category. Conclusion. Underlying diagnosis is independently associated with ADL limitations and pain after revision TKA. This information can help patients have realistic expectations of outcomes. PMID:24196389

  17. [The preliminary draft of the methodology report by the Patient-Centered Outcomes Research Institute].

    PubMed

    Schmiemann, Guido

    2012-01-01

    There is a mismatch between results of clinical trials and the needs of patients. The Patient-Centered Outcomes Research Institute (PCORI) in the US will commission research that supports patients and providers of care to make informed decisions. The preliminary draft of a methodology report presented by PCORI contains methodological standards which researchers will have to take into account when applying for funds from PCORI. An innovative instrument, the "Translation Tool" has been introduced to judge the best match between a specific research question and the corresponding methods. The "Translation Tool" structures the necessary trade-offs (e.g. between validity, patient-centered endpoints, timeliness, and resources) in a transparent manner. This article summarizes the development, structure and content of the methodology report. (As supplied by publisher). PMID:22981026

  18. Patient-reported outcomes after neoadjuvant therapy for rectal cancer: a systematic review.

    PubMed

    Gavaruzzi, Teresa; Lotto, Lorella; Giandomenico, Francesca; Perin, Alessandro; Pucciarelli, Salvatore

    2014-08-01

    Neoadjuvant therapy followed by total mesorectal excision is standard of care for locally advanced rectal cancer. However, this approach has been previously shown to be associated with high rate of morbidity and it may have a negative effect on patients' reported outcomes (PROs). In order to summarize findings on the effect of the neoadjuvant approach on PROs, we systematically reviewed articles published in the last five years. Thirty-five articles met the inclusion criteria. Ten articles compared the effect of surgery with and without neoadjuvant therapy, six articles compared different neoadjuvant therapies, ten articles reported on patients who were all treated with neoadjuvant therapy, and nine articles examined the effect of neoadjuvant therapy in the analyses. The results are summarized by function investigated and critically commented. PMID:24745308

  19. Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities.

    PubMed

    Porter, Ian; Gonçalves-Bradley, Daniela; Ricci-Cabello, Ignacio; Gibbons, Chris; Gangannagaripalli, Jaheeda; Fitzpatrick, Ray; Black, Nick; Greenhalgh, Joanne; Valderas, Jose M

    2016-08-01

    Patient-reported outcomes (PROs) are reports of the status of a patient's health condition that come directly from the patient. While PRO measures are a well-developed technology with robust standards in research, their use for informing healthcare decisions is still poorly understood. We review relevant examples of their application in the provision of healthcare and examine the challenges associated with implementing PROs in clinical settings. We evaluate evidence for their use and examine barriers to their uptake, and present an evidence-based framework for the successful implementation of PROs in clinical practice. We discuss current and future developments for the use of PROs in clinical practice, such as individualized measurement and computer-adaptive testing. PMID:27427277

  20. Testing the Validity and Reliability of the Shame Questionnaire among Sexually Abused Girls in Zambia

    PubMed Central

    Michalopoulos, Lynn T. M.; Murray, Laura K.; Kane, Jeremy C.; Skavenski van Wyk, Stephanie; Chomba, Elwyn; Cohen, Judith; Imasiku, Mwiya; Semrau, Katherine; Unick, Jay; Bolton, Paul A.

    2015-01-01

    Purpose The aim of the current study is to test the validity and reliability of the Shame Questionnaire among traumatized girls in Lusaka, Zambia. Methods The Shame Questionnaire was validated through both classical test and item response theory methods. Internal reliability, criterion validity and construct validity were examined among a sample of 325 female children living in Zambia. Sub-analyses were conducted to examine differences in construct validity among girls who reported sexual abuse and girls who did not. Results All girls in the sample were sexually abused, but only 61.5% endorsed or reported that sexual abuse had occurred. Internal consistency was very good among the sample with alpha = .87. Criterion validity was demonstrated through a significant difference of mean Shame Questionnaire scores between girls who experienced 0–1 trauma events and more than one traumatic event, with higher mean Shame Questionnaire scores among girls who had more than one traumatic event (p = .004 for 0–1 compared to 2 and 3 events and p = .016 for 0–1 compared to 4+ events). Girls who reported a history of witnessing or experiencing physical abuse had a significantly higher mean Shame Questionnaire score than girls who did not report a history of witnessing or experiencing physical abuse (p<.0001). There was no significant difference in mean Shame Questionnaire score between girls who reported a sexual abuse history and girls who did not. Exploratory factor analysis indicated a two-factor model of the Shame Questionnaire, with an experience of shame dimension and an active outcomes of shame dimension. Item response theory analysis indicated adequate overall item fit. Results also indicate potential differences in construct validity between girls who did and did not endorse sexual abuse. Conclusions This study suggests the general utility of the Shame Questionnaire among Zambian girls and demonstrates the need for more psychometric studies in low and middle income

  1. Clinical Outcome Assessments: Conceptual Foundation–Report of the ISPOR Clinical Outcomes Assessment – Emerging Good Practices for Outcomes Research Task Force DOES THIS HAVE TO BE LABLED AS PART 1

    PubMed Central

    Walton, Marc K; Powers, John H; Hobart, Jeremy; Patrick, Donald L; Marquis, Patrick; Vamvakas, Sprios; Isaac, Maria; Molsen, Elizabeth; Cano, Stefan J; Burke, Laurie

    2015-01-01

    An outcome assessment, the patient assessment used in an endpoint, is the measuring instrument that provides a rating or score (categorical or continuous) that is intended to represent some aspect of the patient’s health status. Outcome assessments are used to define efficacy endpoints when developing a therapy for a disease or condition. Most efficacy endpoints are based on specified clinical assessments of patients. When clinical assessments are used as clinical trial outcomes, they are called clinical outcome assessments (COAs). COAs include any assessment that may be influenced by human choices, judgment, or motivation, COAs must be well-defined and possess adequate measurement properties in order to demonstrate (directly or indirectly) the benefits of a treatment. In contrast, a biomarker assessment is one that is subject to little, if any, patient motivational or rater judgmental influence. This is the first of two reports by the ISPOR Clinical Outcomes Assessment – Emerging Good Practices for Outcomes Research Task Force. This report provides foundational definitions important for an understanding of COA measurement principles. The foundation provided in this report includes what it means to demonstrate a beneficial effect, how assessments of patients relate to the objective of showing a treatment’s benefit, and how these assessments are used in clinical trial endpoints. In addition, this report describes intrinsic attributes of patient assessments and clinical trial factors that can affect the properties of the measurements. These factors should be considered when developing or refining assessments. These considerations will aid investigators designing trials in their choice of using an existing assessment or developing a new outcome assessment. Although the focus of this report is in the development of a new COA to define endpoints in a clinical trial, these principles may be applied more generally. A critical element in appraising or developing a

  2. Effect of Certolizumab Pegol on Multiple Facets of Psoriatic Arthritis as Reported by Patients: 24-Week Patient-Reported Outcome Results of a Phase III, Multicenter Study

    PubMed Central

    Gladman, D; Fleischmann, R; Coteur, G; Woltering, F; Mease, P J

    2014-01-01

    Objective To examine the effect of certolizumab pegol (CZP) on patient-reported outcomes (PROs) in psoriatic arthritis (PsA) patients with and without prior tumor necrosis factor (TNF) inhibitor exposure. Methods The ongoing phase III RAPID-PsA trial was double blind and placebo controlled to week 24. Patients were randomized 1:1:1 to placebo every 2 weeks or CZP 400 mg at weeks 0, 2, and 4, followed by either CZP 200 mg every 2 weeks or CZP 400 mg every 4 weeks. PRO measures evaluated were the Health Assessment Questionnaire (HAQ) disability index (DI), health status (measured by the Short Form 36 [SF-36] health survey), Psoriatic Arthritis Quality of Life (PsAQOL), Fatigue Assessment Scale, patient assessment of pain (visual analog scale), and Dermatology Life Quality Index (DLQI). Post hoc analyses of PROs in patients with and without prior TNF inhibitor exposure were conducted. Change from baseline for all PROs was analyzed for the randomized population using analysis of covariance with last observation carried forward imputation. Results A total of 409 patients were randomized. Twenty percent had received a prior TNF inhibitor. Baseline demographics were similar between the treatment groups. At week 24, clinically meaningful differences in HAQ DI, SF-36, PsAQOL, fatigue, pain, and DLQI were observed in both CZP arms versus placebo (P < 0.001), irrespective of prior TNF inhibitor exposure. More CZP-treated patients reached SF-36 general population norms than placebo-treated patients. Conclusion Both CZP dosing schedules provided rapid improvements in PROs across multiple disease aspects in patients with PsA. The benefits of CZP treatment for health-related quality of life were seen across generic, PsA-specific, and dermatology-specific measures and were observed in patients regardless of prior TNF inhibitor exposure. PMID:24339179

  3. Preferred Reporting Items for Studies Mapping onto Preference-Based Outcome Measures: The MAPS Statement.

    PubMed

    Petrou, Stavros; Rivero-Arias, Oliver; Dakin, Helen; Longworth, Louise; Oppe, Mark; Froud, Robert; Gray, Alastair

    2015-10-01

    'Mapping' onto generic preference-based outcome measures is increasingly being used as a means of generating health utilities for use within health economic evaluations. Despite the publication of technical guides for the conduct of mapping research, guidance for the reporting of mapping studies is currently lacking. The MAPS (MApping onto Preference-based measures reporting Standards) statement is a new checklist, which aims to promote complete and transparent reporting of mapping studies. The primary audiences for the MAPS statement are researchers reporting mapping studies, the funders of the research, and peer reviewers and editors involved in assessing mapping studies for publication. A de novo list of 29 candidate reporting items and accompanying explanations was created by a working group comprising six health economists and one Delphi methodologist. Following a two-round modified Delphi survey with representatives from academia, consultancy, health technology assessment agencies and the biomedical journal editorial community, a final set of 23 items deemed essential for transparent reporting, and accompanying explanations, was developed. The items are contained in a user-friendly 23-item checklist. They are presented numerically and categorised within six sections, namely: (1) title and abstract; (2) introduction; (3) methods; (4) results; (5) discussion; and (6) other. The MAPS statement is best applied in conjunction with the accompanying MAPS explanation and elaboration document. It is anticipated that the MAPS statement will improve the clarity, transparency and completeness of reporting of mapping studies. To facilitate dissemination and uptake, the MAPS statement is being co-published by seven health economics and quality-of-life journals, and broader endorsement is encouraged. The MAPS working group plans to assess the need for an update of the reporting checklist in 5 years' time. PMID:26232201

  4. Comparing the validity of the self reporting questionnaire and the Afghan symptom checklist: dysphoria, aggression, and gender in transcultural assessment of mental health

    PubMed Central

    2014-01-01

    Background The relative performance of local and international assessment instruments is subject to ongoing discussion in transcultural research on mental health and psychosocial support. We examined the construct and external validity of two instruments, one developed for use in Afghanistan, the other developed by the World Health Organization for use in resource-poor settings. Methods We used data collected on 1003 Afghan adults (500 men, 503 women) randomly sampled at three sites in Afghanistan. We compared the 22-item Afghan Symptom Checklist (ASCL), a culturally-grounded assessment of psychosocial wellbeing, with Pashto and Dari versions of the 20-item Self-Reporting Questionnaire (SRQ-20). We derived subscales using exploratory and confirmatory factor analyses (EFA and CFA) and tested total and subscale scores for external validity with respect to lifetime trauma and household wealth using block model regressions. Results EFA suggested a three-factor structure for SRQ-20 - somatic complaints, negative affect, and emotional numbing - and a two-factor structure for ASCL - jigar khun (dysphoria) and aggression. Both factor models were supported by CFA in separate subsamples. Women had higher scores for each of the five subscales than men (p < 0.001), and larger bivariate associations with trauma (rs .24 to .29, and .10 to .19, women and men respectively) and household wealth (rs -.27 to -.39, and .05 to -.22, respectively). The three SRQ-20 subscales and the ASCL jigar khun subscale were equally associated with variance in trauma exposures. However, interactions between gender and jigar khun suggested that, relative to SRQ-20, the jigar khun subscale was more strongly associated with household wealth for women; similarly, gender interactions with aggression indicated that the aggression subscale was more strongly associated with trauma and wealth. Conclusions Two central elements of Afghan conceptualizations of mental distress - aggression and the syndrome

  5. Psychometric properties and longitudinal validation of the self-reporting questionnaire (SRQ-20) in a Rwandan community setting: a validation study

    PubMed Central

    2011-01-01

    Background This study took place to enable the measurement of the effects on mental health of a psychosocial intervention in Rwanda. It aimed to establish the capacities of the Self-Reporting Questionnaire (SRQ-20) to screen for mental disorder and to assess symptom change over time in a Rwandan community setting. Methods The SRQ-20 was translated into Kinyarwanda in a process of forward and back-translation. SRQ-20 data were collected in a Rwandan setting on 418 respondents; a random subsample of 230 respondents was assessed a second time with a three month time interval. Internal reliability was tested using Cronbach's alpha. The optimal cut-off point was determined by calculating Receiver Operating Curves, using semi-structured clinical interviews as standard in a random subsample of 99 respondents. Subsequently, predictive value, likelihood ratio, and interrater agreement were calculated. The factor structure of the SRQ-20 was determined through exploratory factor analysis. Factorial invariance over time was tested in a multigroup confirmatory factor analysis. Results The reliability of the SRQ-20 in women (α = 0.85) and men (α = 0.81) could be considered good. The instrument performed moderately well in detecting common mental disorders, with an area under the curve (AUC) of 0.76 for women and 0.74 for men. Cut-off scores were different for women (10) and men (8). Factor analysis yielded five factors, explaining 38% of the total variance. The factor structure proved to be time invariant. Conclusions The SRQ-20 can be used as a screener to detect mental disorder in a Rwandan community setting, but cut-off scores need to be adjusted for women and men separately. The instrument also shows longitudinal factorial invariance, which is an important prerequisite for assessing changes in symptom severity. This is a significant finding as in non-western post-conflict settings the relevance of diagnostic categories is questionable. The use of the SRQ-20 can be

  6. Patient-Reported Outcomes and Total Health Care Expenditure in Prediction of Patient Satisfaction: Results From a National Study

    PubMed Central

    Zhang, Weiping; Chen, Wei; Bounsanga, Jerry; Cheng, Christine; Franklin, Jeremy D; Crum, Anthony B; Voss, Maren W; Hon, Shirley D

    2015-01-01

    Background Health care quality is often linked to patient satisfaction. Yet, there is a lack of national studies examining the relationship between patient satisfaction, patient-reported outcomes, and medical expenditure. Objective The aim of this study is to examine the contribution of physical health, mental health, general health, and total health care expenditures to patient satisfaction using a longitudinal, nationally representative sample. Methods Using data from the 2010-2011 Medical Expenditure Panel Survey, analyses were conducted to predict patient satisfaction from patient-reported outcomes and total health care expenditures. The study sample consisted of adult participants (N=10,157), with sampling weights representative of 233.26 million people in the United States. Results The results indicated that patient-reported outcomes and total health care expenditure were associated with patient satisfaction such that higher physical and mental function, higher general health status, and higher total health care expenditure were associated with higher patient satisfaction. Conclusions We found that patient-reported outcomes and total health care expenditure had a significant relationship with patient satisfaction. As more emphasis is placed on health care value and quality, this area of research will become increasingly needed and critical questions should be asked about what we value in health care and whether we can find a balance between patient satisfaction, outcomes, and expenditures. Future research should apply big data analytics to investigate whether there is a differential effect of patient-reported outcomes and medical expenditures on patient satisfaction across different medical specialties. PMID:27227131

  7. Introducing the Concept of the Minimally Important Difference to Determine a Clinically Relevant Change on Patient-Reported Outcome Measures in Patients with Intermittent Claudication

    SciTech Connect

    Conijn, Anne P.; Jonkers, Wilma; Rouwet, Ellen V.; Vahl, Anco C.; Reekers, Jim A.; Koelemay, Mark J. W.

    2015-10-15

    PurposeThe minimally important difference (MID) represents the smallest change in score on patient-reported outcome measures that is relevant to patients. The aim of this study was to introduce the MID for the Vascular Quality of Life Questionnaire (VascuQol) and the walking impairment questionnaire (WIQ) for patients with intermittent claudication (IC).MethodsIn this multicenter study, we recruited 294 patients with IC between July and October 2012. Patients completed the VascuQol, with scores ranging from 1 to 7 (worst to best), and the WIQ, with scores ranging from 0 to 1 (worst to best) at first visit and after 4 months follow-up. In addition, patients answered an anchor-question rating their health status compared to baseline, as being improved, unchanged, or deteriorated. The MID for improvement and deterioration was calculated by an anchor-based approach, and determined with the upper and lower limits of the 95 % confidence interval of the mean change of the group who had not changed according to the anchor-question.ResultsFor the MID analyses of the VascuQol and WIQ, 163 and 134 patients were included, respectively. The MID values for the VascuQol (mean baseline score 4.25) were 0.87 for improvement and 0.23 for deterioration. For the WIQ (mean baseline score 0.39), we found MID values of 0.11 and −0.03 for improvement and deterioration, respectively.ConclusionIn this study, we calculated the MID for the VascuQol and the WIQ. Applying these MID facilitates better interpretation of treatment outcomes and can help to set treatment goals for individual care.

  8. Responsive Professional Education: Balancing Outcomes and Opportunities. ASHE-ERIC Higher Education Report No. 3, 1986.

    ERIC Educational Resources Information Center

    Stark, Joan S.; And Others

    Goals and outcomes in various fields of professional education are considered. Attention is directed to generic outcomes of professional preparation, the emphasis these outcomes receive among professional educators, some problems that concern professional educators, and recommendations for future action and study. The generic outcomes, which were…

  9. Delaware Student Testing Program: Report of Student Questionnaire Survey--2000 Administration in Science and Social Studies for Grades 4 and 6.

    ERIC Educational Resources Information Center

    Zhang, Liru

    At the administration of the Delaware Student Testing Program (DSTP) science and social studies tests in 2000, a questionnaire survey was given to students in grades 4 and 6. Survey questions were developed in three categories: (1) Opportunity To Learn; (2) Science; and (3) Social Studies. Student responses were analyzed by test, grade, gender,…

  10. Learning a Third Language. English as a School Language for Bilingual and Multilingual Pupils: A Questionnaire Report. Research Bulletin No. 22

    ERIC Educational Resources Information Center

    Lindblad, Torsten; Lindblad, Anita

    The educational status and English proficiency of immigrants to Sweden at the end of their compulsory schooling was investigated. Questionnaires were completed by 26 schools in 10 Swedish cities regarding the problems associated with the study of English as a third language by immigrant students in the comprehensive school. Schools in districts…

  11. Federal-State Environmental Programs: The State Perspective. A Compilation of Questionnaire Responses. Supplement to a Report to the Congress by the Comptroller General of the United States.

    ERIC Educational Resources Information Center

    Comptroller General of the U.S., Washington, DC.

    Summarized are responses to questionnaires prepared by the United States General Accounting Office (GAO) and mailed to state-level environmental agency administrators. Also included in this survey are state program directors responsible for administering the Clean Air Act; the Federal Insecticide, Fungicide and Rodenticide Act; the Clean Water…

  12. SAT Monitor Program. High School Students View the SAT and College Admissions Process. Report on Wave of Completed Questionnaires Associated with December 1977 SAT Administration.

    ERIC Educational Resources Information Center

    Response Analysis Corp., Princeton, NJ.

    College applicants taking the Scholastic Aptitude Test (SAT) and the Test of Standard Written English (TSWE) were surveyed regarding the tests, college admission in general, and the communications received concerning the test and their scores. Separate questionnaires were administered before taking the SAT or TSWE, after taking the test, and after…

  13. Young People and Illegal Drugs, 1989-1995: Facts and Predictions. A Report Based on Data Collected between 1989 and 1994, Using the Health Related Behaviour Questionnaire.

    ERIC Educational Resources Information Center

    Balding, John

    The Schools Health Education Unit supports and promotes effective health education in primary and secondary schools. The services it provides promote cooperation between teachers, parents, children, governors, and health-care professionals. A school deciding to use the Health Related Behaviour Questionnaire, developed by the Schools Health…

  14. The Utility of Job Dimensions Based on Form B of the Position Analysis Questionnaire (PAQ) in a Job Component Validation Model. Report No. 5.

    ERIC Educational Resources Information Center

    Marquardt, Lloyd D.; McCormick, Ernest J.

    The study involved the use of a structured job analysis instrument called the Position Analysis Questionnaire (PAQ) as the direct basis for the establishment of the job component validity of aptitude tests (that is, a procedure for estimating the aptitude requirements for jobs strictly on the basis of job analysis data). The sample of jobs used…

  15. Utility of the "Social Communication Questionnaire-Current" and "Social Responsiveness Scale" as Teacher-Report Screening Tools for Autism Spectrum Disorders

    ERIC Educational Resources Information Center

    Schanding, G. Thomas, Jr.; Nowell, Kerri P.; Goin-Kochel, Robin P.

    2012-01-01

    Limited research exists regarding the role of teachers in screening for Autism Spectrum Disorders (ASD). The current study examined the use of the "Social Communication Questionnaire" (SCQ) and "Social Responsiveness Scale" (SRS) as completed by parents and teachers about school-age children from the Simons Simplex Collection. Using the…

  16. Delaware Student Testing Program: Report of Student Questionnaire Survey, 2002 DSTP Administration for Grades 3, 5, 8, 10, and 11 in Reading, Writing, Mathematics, Science, and Social Studies.

    ERIC Educational Resources Information Center

    Delaware State Dept. of Education, Dover. Assessment and Accountability Branch.

    With the administration of the 2002 Delaware Student Testing Program (DSTP), a questionnaire was given to students in grades 3, 5, 8, and 10 about Opportunity to Learn, Reading, Writing, and Mathematics, and to all students in grades 4, 6, 8, and 11 about Opportunity to Learn, Science, and Social Studies. Students responses to the questions were…

  17. The Validation of the Spatial Hearing Questionnaire

    PubMed Central

    Tyler, Richard S.; Perreau, Ann E.; Ji, Haihong

    2009-01-01

    Objectives Subjective questionnaires are informative in understanding the difficulties faced by patients with hearing loss. Our intent was to establish and validate a new questionnaire that encompasses situations emphasizing binaural hearing. The Spatial Hearing Questionnaire is a self-report assessment tool utilizing eight subscales representing questions pertaining to the perception of male, female, and children’s voices, music in quiet, source localization, understanding speech in quiet, and understanding speech in noise. Design The Spatial Hearing Questionnaire, composed of 24 items, is scored from 0–100. It was administered to 142 subjects using one or two cochlear implants. Speech perception and localization abilities were measured, and the Speech, Spatial and Other Qualities (SSQ) questionnaire was completed to evaluate validity of the questionnaire. Psychometric tests were done to test the reliability and factor structure of the Spatial Hearing Questionnaire. Results Results showed high internal consistency reliability (Cronbach’s α = 0.98) and good construct validity (correlations between the Spatial Hearing Questionnaire and other test measures, including the SSQ, were significant). A preliminary factor analysis revealed scores loaded on three factors, representing the following conditions: localization, speech in noise and music in quiet, and speech in quiet, explaining 64.9, 13.0, and 5.3% of the variance, respectively. Most of the questionnaire items (12/24) loaded onto the first factor which represents the subscale related to source localization. Mean scores on the Spatial Hearing Questionnaire were higher for subjects with bilateral cochlear implants over subjects with a unilateral cochlear implant, consistent with other research and supporting construct validity. Conclusions The Spatial Hearing Questionnaire is a reliable and valid questionnaire which can be completed independently by most patients in about 10 minutes. It is likely to be a

  18. The Establishment of the GENEQOL Consortium to Investigate the Genetic Disposition of Patient-Reported Quality-of-Life Outcomes

    PubMed Central

    Sprangers, Mirjam A. G.; Sloan, Jeff A.; Veenhoven, Ruut; Cleeland, Charles S.; Halyard, Michele Y.; Abertnethy, Amy P.; Baas, Frank; Barsevick, Andrea M.; Bartels, Meike; Boomsma, Dorret I.; Chauhan, Cynthia; Dueck, Amylou C.; Frost, Marlene H.; Hall, Per; Klepstad, Pål; Martin, Nicholas G.; Miaskowski, Christine; Mosing, Miriam; Movsas, Benjamin; Van Noorden, Cornelis J. F.; Patrick, Donald L.; Pedersen, Nancy L.; Ropka, Mary E.; Shi, Quiling; Shinozaki, Gen; Singh, Jasvinder A.; Yang, Ping; Zwinderman, Ailko H.

    2010-01-01

    To our knowledge, no comprehensive, interdisciplinary initiatives have been taken to examine the role of genetic variants on patient-reported quality-of-life outcomes. The overall objective of this paper is to describe the establishment of an international and interdisciplinary consortium, the GENEQOL Consortium, which intends to investigate the genetic disposition of patient-reported quality-of-life outcomes. We have identified five primary patient-reported quality-of-life outcomes as initial targets: negative psychological affect, positive psychological affect, self-rated physical health, pain, and fatigue. The first tangible objective of the GENEQOL Consortium is to develop a list of potential biological pathways, genes and genetic variants involved in these quality-of-life outcomes, by reviewing current genetic knowledge. The second objective is to design a research agenda to investigate and validate those genes and genetic variants of patient-reported quality-of-life outcomes, by creating large datasets. During its first meeting, the Consortium has discussed draft summary documents addressing these questions for each patient-reported quality-of-life outcome. A summary of the primary pathways and robust findings of the genetic variants involved is presented here. The research agenda outlines possible research objectives and approaches to examine these and new quality-of-life domains. Intriguing questions arising from this endeavor are discussed. Insight into the genetic versus environmental components of patient-reported quality-of-life outcomes will ultimately allow us to explore new pathways for improving patient care. If we can identify patients who are susceptible to poor quality of life, we will be able to better target specific clinical interventions to enhance their quality of life and treatment outcomes. PMID:19456223

  19. The Depression Coping Questionnaire.

    ERIC Educational Resources Information Center

    Kleinke, Chris L.

    College students (N=396), chronic pain patients (N=319), and schizophrenic veterans (N=43) completed the Depression Coping Questionnaire (DCQ) and the Beck Depression Inventory (BDI). Factor analysis of the DCQ identified eleven coping responses: social support, problem solving, self-blame/escape, aggression, indulgence, activities, medication,…

  20. Satisfaction With Teaching Questionnaire.

    ERIC Educational Resources Information Center

    Merwin, J. C.; DiVesta , F. J.

    As part of the instrumentation to assess the effectiveness of the Schools Without Failure (SEF) program in 10 elementary schools in the New Castle, Pa. School District, the Satisfaction with Teaching Questionnaire was used. In a study by its developers this scale discriminated between students choosing to be teachers and those choosing other…

  1. Beyond FEV1 in COPD: a review of patient-reported outcomes and their measurement

    PubMed Central

    Jones, Paul; Miravitlles, Marc; van der Molen, Thys; Kulich, Karoly

    2012-01-01

    Patients with chronic obstructive pulmonary disease (COPD) present with a variety of symptoms and pathological consequences. Although primarily viewed as a respiratory disease, COPD has both pulmonary and extrapulmonary effects, which have an impact on many aspects of physical, emotional, and mental well-being. Traditional assessment of COPD relies heavily on measuring lung function, specifically forced expiratory volume in 1 second (FEV1). However, the evidence suggests that FEV1 is a relatively poor correlate of symptoms such as breathlessness and the impact of COPD on daily life. Furthermore, many consequences of the disease, including anxiety and depression and the ability to perform daily activities, can only be described and reported reliably by the patient. Thus, in order to provide a comprehensive view of the effects of interventions in clinical trials, it is essential that spirometry is accompanied by assessments using patient-reported outcome (PRO) instruments. We provide an overview of patient-reported outcome concepts in COPD, such as breathlessness, physical functioning, and health status, and evaluate the tools used for measuring these concepts. Particular attention is given to the newly developed instruments emerging in response to recent regulatory guidelines for the development and use of PROs in clinical trials. We conclude that although data from the development and validation of these new PRO instruments are emerging, to build the body of evidence that supports the use of a new instrument takes many years. Furthermore, new instruments do not necessarily have better discriminative or evaluative properties than older instruments. The development of new PRO tools, however, is crucial, not only to ensure that key COPD concepts are being reliably measured but also that the relevant treatment effects are being captured in clinical trials. In turn, this will help us to understand better the patient’s experience of the disease. PMID:23093901

  2. Impact of natalizumab on patient-reported outcomes in multiple sclerosis: a longitudinal study

    PubMed Central

    2012-01-01

    Background Natalizumab (Tysabri, Biogen Idec and Elan Pharmaceuticals) significantly reduces the relapse rate and disability progression, and improves health-related quality of life (HRQoL), in patients with relapsing-remitting multiple sclerosis. We investigated the impact of natalizumab on patient-reported outcomes (PROs) in a real-world setting. Methods PRO data were collected from patients enrolled in a longitudinal real-world study using validated measures administered as surveys before the patients initiated natalizumab treatment and after the 3rd, 6th, and 12th monthly infusion. HRQoL, ability to carry out daily activities, disability level, and impact on cognitive functioning and fatigue were assessed. Results A total of 333 patients completed 12 months of assessments. After 12 months of natalizumab treatment, 69% to 88% of patients reported a positive outcome (either an improvement or no further decline) in all PRO measures assessed. Significant improvements in general and disease-specific HRQoL were observed after three infusions, both with physical (p < .01) and psychological (p < .001) measures, and were sustained after 12 infusions (all p < .001). The impact of multiple sclerosis on cognitive functioning and fatigue was significantly reduced (both p < .001 after 3 and 12 infusions). Conclusions PRO measures were improved with natalizumab in a real-world setting. The improvements were observed as early as after 3 months and sustained over a 12-month period. The improvements in PROs show that, in clinical practice, the clinical benefits of natalizumab are translated into patient-reported benefits. PMID:23270428

  3. Adverse Outcomes Among Homeless Adolescents and Young Adults Who Report a History of Traumatic Brain Injury

    PubMed Central

    Harpin, Scott B.; Grubenhoff, Joseph A.; Rivara, Frederick P.

    2014-01-01

    Objectives. We examined the prevalence of self-reported traumatic brain injury (TBI) among homeless young people and explored whether sociodemographic characteristics, mental health diagnoses, substance use, exposure to violence, or difficulties with activities of daily living (ADLs) were associated with TBI. Methods. We analyzed data from the Wilder Homelessness Study, in which participants were recruited in 2006 and 2009 from streets, shelters, and locations in Minnesota that provide services to homeless individuals. Participants completed 30-minute interviews to collect information about history of TBI, homelessness, health status, exposure to violence (e.g., childhood abuse, assault), and other aspects of functioning. Results. Of the 2732 participating adolescents and young adults, 43% reported a history of TBI. Participants with TBI became homeless at a younger age and were more likely to report mental health diagnoses, substance use, suicidality, victimization, and difficulties with ADLs. The majority of participants (51%) reported sustaining their first injury prior to becoming homeless or at the same age of their first homeless episode (10%). Conclusions. TBI occurs frequently among homeless young people and is a marker of adverse outcomes such as mental health difficulties, suicidal behavior, substance use, and victimization. PMID:25122029

  4. Factor Analysis of the Modified Sexual Adjustment Questionnaire-Male

    PubMed Central

    Wilmoth, Margaret C.; Hanlon, Alexandra L.; Ng, Lit Soo; Bruner, Debra W.

    2015-01-01

    Background and Purpose The Sexual Adjustment Questionnaire (SAQ) is used in National Cancer Institute–sponsored clinical trials as an outcome measure for sexual functioning. The tool was revised to meet the needs for a clinically useful, theory-based outcome measure for use in both research and clinical settings. This report describes the modifications and validity testing of the modified Sexual Adjustment Questionnaire-Male (mSAQ-Male). Methods This secondary analysis of data from a large Radiation Therapy Oncology Group trial employed principal axis factor analytic techniques in estimating validity of the revised tool. The sample size was 686; most subjects were White, older than the age 60 years, and with a high school education and a Karnofsky performance scale (KPS) score of greater than 90. Results A 16-item, 3-factor solution resulted from the factor analysis. The mSAQ-Male was also found to be sensitive to changes in physical sexual functioning as measured by the KPS. Conclusion The mSAQ-Male is a valid self-report measure of sexuality that can be used clinically to detect changes in male sexual functioning. PMID:25255676

  5. Improving treatment satisfaction and other patient-reported outcomes in people with type 2 diabetes: the role of once-daily insulin glargine.

    PubMed

    Bradley, C; Gilbride, C J B

    2008-07-01

    Insulin therapy becomes essential for many people with type 2 diabetes. After starting insulin, people with diabetes that is poorly controlled with oral agents typically report improved well-being and treatment satisfaction. However, healthcare professionals and people with type 2 diabetes are often reluctant to begin insulin treatment, citing concerns such as time/resources needed to educate patients, increased risks of hypoglycaemia and fear of injections, which lead them to focus on intensifying conventional oral therapy. Insulin glargine, which offers people with diabetes a once-a-day injection regimen with low risk of hypoglycaemia, is more likely to overcome such initial barriers than other more complex insulin regimens. Once-daily insulin glargine, in combination with modern glucose-dependent oral agents that do not need to be chased with food to prevent hypoglycaemia, does not require the fixed mealtimes and set amounts of carbohydrates necessary with twice-daily injection mixes and older sulphonylureas. We know that it is such dietary restrictions that cause the most damage to quality of life (QoL). To avoid damaging QoL unnecessarily and to ensure optimal satisfaction with treatment, it is important to evaluate the effects of treatment on QoL, treatment satisfaction and other patient-reported outcomes (PROs) using questionnaires validated for this purpose, such as the widely used Diabetes Treatment Satisfaction Questionnaire and the Audit of Diabetes-Dependent Quality of Life measure. A systematic electronic literature search identified reports of studies evaluating PROs associated with insulin glargine in comparison with other treatments. The studies show that insulin glargine is usually associated with greater improvements in treatment satisfaction and other PROs compared with intensifying oral therapy or alternative insulin regimens. PMID:18577157

  6. The Impact of Different Surgical Modalities for Hysterectomy on Satisfaction and Patient Reported Outcomes

    PubMed Central

    2014-01-01

    Background There is an ongoing debate regarding the cost-benefit of different surgical modalities for hysterectomy. Studies have relied primarily on evaluation of clinical outcomes and medical expenses. Thus, a paucity of information on patient-reported outcomes including satisfaction, recovery, and recommendations exists. Objective The objective of this study was to identify differences in patient satisfaction and recommendations by approach to a hysterectomy. Methods We recruited a large, geographically diverse group of women who were members of an online hysterectomy support community. US women who had undergone a benign hysterectomy formed this retrospective study cohort. Self-reported characteristics and experiences were compared by surgical modality using chi-square tests. Outcomes over time were assessed with the Jonkheere-Terpstra trend test. Logistic regression identified independent predictors of patient satisfaction and recommendations. Results There were 6262 women who met the study criteria; 41.74% (2614/6262) underwent an abdominal hysterectomy, 10.64% (666/6262) were vaginal, 27.42% (1717/6262) laparoscopic, 18.94% (1186/6262) robotic, and 1.26% (79/6262) single-incision laparoscopic. Most women were at least college educated (56.37%, 3530/6262), and identified as white, non-Hispanic (83.17%, 5208/6262). Abdominal hysterectomy rates decreased from 68.2% (152/223) to 24.4% (75/307), and minimally invasive surgeries increased from 31.8% (71/223) to 75.6% (232/307) between 2001 or prior years and 2013 (P<.001 all trends). Trends in overall patient satisfaction and recommendations showed significant improvement over time (P<.001).There were differences across the surgical modalities in all patient-reported experiences (ie, satisfaction, time to walking, driving and working, and whether patients would recommend or use the same technique again; P<.001). Significantly better outcomes were evident among women who had vaginal, laparoscopic, and robotic

  7. Infantile Hepatic Hemangioendothelioma Associated With Congestive Heart Failure: Two Case Reports With Different Outcomes.

    PubMed

    Wang, Tao; Wang, Yibin; Liang, Yun; Lu, Guoyan

    2015-12-01

    Infantile hepatic hemangioendothelioma (IHH) is rare which can regress spontaneously. Arteriovenous shunts within hemangiomas, however, may result in pulmonary artery hypertension (PAH) and congestive heart failure (CHF).The authors report 2 young infants suffering from multifocal IHH associated with CHF were both treated with glucocorticoid and transcatheter arterial embolization (TAE), but had different outcomes. The PAH decreased immediately and the symptoms of CHF were alleviated after TAE for both of them. For the Tibetan infant, the development was normal with tumor regression by follow-up. For the Han ethnic neonate, PAH increased again in the seventh day with progressive cardiovascular insufficiency. Ultrasound showed a persisting perfusion caused by collateralization around occluded main feeders. Furthermore, a pulmonary infection occurred and ventilation was performed. As a result, the infant died from multiorgan failure caused by CHF and infection.TAE is a treatment of reducing shunting for hemangiomas. Fistula recanalization in multifocal IHH, however, might be an important risk factor affecting the outcome of TAE. TAE should be further evaluated with special attention to anatomy of feeding and draining vessels, and cardiopulmonary conditions. In addition, the patients were susceptible to secondary pulmonary infection because of lung congestion. As well, the infant from the high altitude area showed better adaptability to hypoxia. PMID:26717373

  8. The Chauvet 2014 Meeting Report: Psychiatric and Psychosocial Evaluation and Outcomes of Upper Extremity Grafted Patients.

    PubMed

    Jowsey-Gregoire, Sheila G; Kumnig, Martin; Morelon, Emmanuel; Moreno, Elisa; Petruzzo, Palmina; Seulin, Christian

    2016-07-01

    Under the auspices for the International Society on Hand and Composite Tissue Allotransplantation, a section of The Transplantation Society (IHCTAS), a meeting was convened on March 21-22, 2014 in Paris to review the following areas that were deemed significant in the understanding of the psychosocial evaluation and outcomes of upper extremity transplant recipients: required domains of the evaluation, screening instruments, clinical monitoring pretransplant, clinical monitoring posttransplant, patient and team expectations, body image, psychiatric complications, functional goals and quality of life, ethics and media relations. Experts in the fields of psychiatry and psychology, transplantation, social work, ethics, and transplant administration met and reviewed center experiences and literature. The attendees highlighted the importance and the complexity of the psychiatric assessment in this field of transplantation. Moreover, the necessity to develop common instruments and evaluation protocols to predict psychosocial outcomes as well as to understand whether we are transplanting the right patients and how the transplantation is affecting the patients were pointed out. Psychiatric complications in upper extremity transplanted patients have been reported by the majority of teams. Preexisting psychiatric difficulties, the initial trauma of amputation, or adjusting to the transplantation process itself (especially the medical follow-up and rehabilitation process) appeared to be important factors. Monitoring during the whole follow-up was recommended to detect psychiatric issues and to facilitate and ensure long-term adherence. The participants proposed an annual meeting format to build upon the findings of this inaugural meeting to be called the Chauvet Workgroup meeting. PMID:26636738

  9. Brief report: do service dog providers placing dogs with children with developmental disabilities use outcome measures and, if so, what are they?

    PubMed

    Butterly, Felicity; Percy, Carol; Ward, Gillian

    2013-11-01

    The aim of this study was to identify the outcomes expected and assessed by those providing service dogs to children with developmental disabilities. Seventeen registered service dog providers were invited to complete a mixed methods online survey. Five providers, who prepared dogs to work with a wide range of conditions and behaviours, mainly Asperger's syndrome, autism and communication disorders, completed the survey. All five participants reported that they expected to see positive changes as a consequence of the service dog placement, in both the recipient child and their family, including improvements in attention span and language skills, as well as increased familial cohesion. Survey responses indicated that not all desired outcomes were routinely assessed. The range of assessments used were interviews, intake conversations, pre-placement questionnaires, child social diaries filled in by parents, follow up surveys after placement, and child observation by parents. No specifically named valid and reliable clinical or research measures were referred to, showing an emphasis on assessments from parents and service dog providers. It is not clear whether pre-intervention assessments are repeated systematically at follow-up, which could show robust intervention effects. There is scope for professionals in developmental disability to work with service dog providers to improve the evidence base in this field. PMID:23479076

  10. Cosmetic Outcomes and Complications Reported by Patients Having Undergone Breast-Conserving Treatment

    SciTech Connect

    Hill-Kayser, Christine E.; Vachani, Carolyn; Hampshire, Margaret K.; Di Lullo, Gloria A.; Metz, James M.

    2012-07-01

    Purpose: Over the past 30 years, much work in treatment of breast cancer has contributed to improvement of cosmetic and functional outcomes. The goal of breast-conservation treatment (BCT) is avoidance of mastectomy through use of lumpectomy and adjuvant radiation. Modern data demonstrate 'excellent' or 'good' cosmesis in >90% of patients treated with BCT. Methods and Materials: Patient-reported data were gathered via a convenience sample frame from breast cancer survivors using a publically available, free, Internet-based tool for creation of survivorship care plans. During use of the tool, breast cancer survivors are queried as to the cosmetic appearance of the treated breast, as well as perceived late effects. All data have been maintained anonymously with internal review board approval. Results: Three hundred fifty-four breast cancer survivors having undergone BCT and voluntarily using this tool were queried with regard to breast cosmesis and perceived late effects. Median diagnosis age was 48 years, and median current age 52 years. 'Excellent' cosmesis was reported by 27% (n = 88), 'Good' by 44% (n = 144), 'Fair' by 24% (n = 81), and 'Poor' by 5% (n = 18). Of the queries posted to survivors after BCT, late effects most commonly reported were cognitive changes (62%); sexual concerns (52%); changes in texture and color of irradiated skin (48%); chronic pain, numbness, or tingling (35%); and loss of flexibility in the irradiated area (30%). Survivors also described osteopenia/osteoporosis (35%), cardiopulmonary problems (12%), and lymphedema (19%). Conclusions: This anonymous tool uses a convenience sample frame to gather patient reported assessments of cosmesis and complications after breast cancer. Among the BCT population, cosmetic assessment by survivors appears less likely to be 'excellent' or 'good' than would be expected, with 30% of BCT survivors reporting 'fair' or 'poor' cosmesis. Patient reported incidence of chronic pain, as well as cognitive and

  11. Effect of Public Reporting on Intensive Care Unit Discharge Destination and Outcomes

    PubMed Central

    Reineck, Lora A.; Le, Tri Q.; Seymour, Christopher W.; Barnato, Amber E.; Angus, Derek C.

    2015-01-01

    Rationale: Public reporting of hospital performance is designed to improve healthcare outcomes by promoting quality improvement and informing consumer choice, but these programs may carry unintended consequences. Objective: To determine whether publicly reporting in-hospital mortality rates for intensive care unit (ICU) patients influenced discharge patterns or mortality. Methods: We performed a retrospective cohort study taking advantage of a natural experiment in which California, but not other states, publicly reported hospital-specific severity-adjusted ICU mortality rates between 2007 and 2012. We used multivariable logistic regression adjusted for patient, hospital, and regional characteristics to compare mortality rates and discharge patterns between California and states without public reporting for Medicare fee-for-service ICU admissions from 2005 through 2009 using a difference-in-differences approach. Measurements and Main Results: We assessed discharge patterns using post-acute care use and acute care hospital transfer rates and mortality using in-hospital and 30-day mortality rates. The study cohort included 936,063 patients admitted to 646 hospitals. Compared with control subjects, admission to a California ICU after the introduction of public reporting was associated with a reduced odds of post-acute care use in post-reform year 2 (ratio of odds ratios [ORs], 0.94; 95% confidence interval [CI], 0.91–0.96) and increased odds of transfer to another acute care hospital in both post-reform years (year 1: ratio of ORs, 1.08; 95% CI, 1.01–1.16; year 2: ratio of ORs, 1.43; 95% CI, 1.33–1.53). There were no significant differences in in-hospital or 30-day mortality. Conclusions: Public reporting of ICU in-hospital mortality rates was associated with changes in discharge patterns but no change in risk-adjusted mortality. PMID:25521696

  12. State Special Education Outcomes, 2001: A Report on State Activities at the Beginning of a New Decade.

    ERIC Educational Resources Information Center

    Thompson, Sandra; Thurlow, Martha

    This report summarizes the eighth survey of state directors of special education by the National Center on Educational Outcomes at the University of Minnesota. Results include all 50 states and the Bureau of Indian Affairs, American Samoa, and Palau. State directors report increased participation rates of students with disabilities in state…

  13. Patterns in the Identification of and Outcomes for Children and Youth with Disabilities. Final Report. NCEE 2010-4005

    ERIC Educational Resources Information Center

    Blackorby, Jose; Schiller, Ellen; Mallik, Sangeeta; Hebbeler, Kathleen; Huang, Tracy; Javitz, Harold; Marder, Camille; Nagle, Katherine; Shaver, Debra; Wagner, Mary; Williamson, Cyndi

    2010-01-01

    Reported here are the results of analyses to describe the patterns of identification and academic and developmental outcomes for children with disabilities, conducted as part of the 2004 National Assessment of the implementation of the Individuals with Disabilities Education Act (IDEA). This report provides background context for National…

  14. Overview of Student Characteristics and Program Outcomes. HEP/CAMP National Evaluation Project. Research Report No. 2.

    ERIC Educational Resources Information Center

    Riley, Gary L.; And Others

    This research report is a detailed summary of student backgrounds, family characteristics, and educational and career outcomes of the respondents in the 1984-85 High School Equivalency Programs (HEP) and College Assistance for Migrants Programs (CAMP) National Evaluation Project. The report indicates that approximately half the HEP/CAMP…

  15. Patient-reported outcomes 3 months after spine surgery: is it an accurate predictor of 12-month outcome in real-world registry platforms?

    PubMed

    Parker, Scott L; Asher, Anthony L; Godil, Saniya S; Devin, Clinton J; McGirt, Matthew J

    2015-12-01

    OBJECT The health care landscape is rapidly shifting to incentivize quality of care rather than quantity of care. Quality and outcomes registry platforms lie at the center of all emerging evidence-driven reform models and will be used to inform decision makers in health care delivery. Obtaining real-world registry outcomes data from patients 12 months after spine surgery remains a challenge. The authors set out to determine whether 3-month patient-reported outcomes accurately predict 12-month outcomes and, hence, whether 3-month measurement systems suffice to identify effective versus noneffective spine care. METHODS All patients undergoing lumbar spine surgery for degenerative disease at a single medical institution over a 2-year period were enrolled in a prospective longitudinal registry. Patient-reported outcome instruments (numeric rating scale [NRS], Oswestry Disability Index [ODI], 12-Item Short Form Health Survey [SF-12], EQ-5D, and the Zung Self-Rating Depression Scale) were recorded prospectively at baseline and at 3 months and 12 months after surgery. Linear regression was performed to determine the independent association of 3- and 12-month outcome. Receiver operating characteristic (ROC) curve analysis was performed to determine whether improvement in general health state (EQ-5D) and disability (ODI) at 3 months accurately predicted improvement and achievement of minimum clinical important difference (MCID) at 12 months. RESULTS A total of 593 patients undergoing elective lumbar surgery were included in the study. There was a significant correlation between 3-month and 12-month EQ-5D (r = 0.71; p < 0.0001) and ODI (r = 0.70; p < 0.0001); however, the authors observed a sizable discrepancy in achievement of a clinically significant improvement (MCID) threshold at 3 versus 12 months on an individual patient level. For postoperative disability (ODI), 11.5% of patients who achieved an MCID threshold at 3 months dropped below this threshold at 12 months; 10

  16. Implementation of an ODM and HL7 Compliant Electronic Patient-Reported Outcome System.

    PubMed

    Soto-Rey, Iñaki; Dugas, Martin; Storck, Michael

    2016-01-01

    Interoperability is one of the biggest issues in health informatics despite of the huge effort invested to solve it. Clinical Data Interchange Standards Consortium (CDISC) and Health Level 7 (HL7) are two of the most recognized institutions working on this field. Several systems are becoming compliant with their standards; however, the process to accomplish it is not always straightforward. In this manuscript, we present the successful implementation of the CDISC ODM and HL7 import and export functions for "MoPat", a web-based multi-language electronic patient-reported outcomes system. The system has been evaluated and tested and is currently being used for clinical study and routine data collection, including more than 10.000 patient encounters. PMID:27577417

  17. Reproductive outcomes in men with karyotype abnormalities: Case report and review of the literature

    PubMed Central

    Kohn, Taylor P.; Clavijo, Raul; Ramasamy, Ranjith; Hakky, Tariq; Candrashekar, Aravind; Lamb, Dolores J.; Lipshultz, Larry I.

    2015-01-01

    Reciprocal translocations of autosomal chromosomes are present in about 1/625 men, yet often there are no symptoms except primary infertility. Abnormal segregation during meiosis often produces sperm and subsequent embryos with unbalanced translocations that often ultimately result in spontaneous abortions. We report on a 37-year-old man and his 39-year-old wife who complained of primary infertility. Previous in vitro fertilization (IVF) had resulted in pregnancy, but two spontaneous abortions. Upon chromosomal testing, the man was diagnosed with a reciprocal translocation and his wife was diagnosed with mosaic Turner’s syndrome. Through testicular sperm extraction (TESE) and IVF with preimplantation genetic screening (PGS), they succeeded in having two healthy children. Since men with different karyotype abnormalities can have male infertility, we reviewed the literature and summarized the reproductive outcomes for men with both autosome and sex chromosomal karyotype abnormalities. PMID:26425238

  18. Reproductive outcomes in men with karyotype abnormalities: Case report and review of the literature.

    PubMed

    Kohn, Taylor P; Clavijo, Raul; Ramasamy, Ranjith; Hakky, Tariq; Candrashekar, Aravind; Lamb, Dolores J; Lipshultz, Larry I

    2015-01-01

    Reciprocal translocations of autosomal chromosomes are present in about 1/625 men, yet often there are no symptoms except primary infertility. Abnormal segregation during meiosis often produces sperm and subsequent embryos with unbalanced translocations that often ultimately result in spontaneous abortions. We report on a 37-year-old man and his 39-year-old wife who complained of primary infertility. Previous in vitro fertilization (IVF) had resulted in pregnancy, but two spontaneous abortions. Upon chromosomal testing, the man was diagnosed with a reciprocal translocation and his wife was diagnosed with mosaic Turner's syndrome. Through testicular sperm extraction (TESE) and IVF with preimplantation genetic screening (PGS), they succeeded in having two healthy children. Since men with different karyotype abnormalities can have male infertility, we reviewed the literature and summarized the reproductive outcomes for men with both autosome and sex chromosomal karyotype abnormalities. PMID:26425238

  19. The Equivalence of Remote Electronic and Paper Patient Reported Outcome (PRO) Collection.

    PubMed

    Griffiths-Jones, W; Norton, M R; Fern, E D; Williams, D H

    2014-11-01

    Individual patient level Patient Reported Outcomes (PROs) are increasingly important in clinical practice. Web-based collection enables clinicians to remotely collect scores at regular intervals, away from the clinic setting. In this randomized crossover study, 47 patients, having undergone hip surgery, were allocated to two groups. Group 1 completed the web-based scores followed by the paper equivalents one week later; Group 2 completed the scores the other way around. The Intraclass Correlation Coefficient (ICC) for the Oxford Hip Score was 0.99, 0.98 to 0.99 (ICC, 95% CI) and the ICCs for the other scores were between 0.95 and 0.97. We conclude that remote ePRO collection using this web-based system reveals excellent equivalence to paper PRO collection of the Oxford Hip, McCarthy, UCLA and howRu scores. PMID:25123605

  20. Development and Validation of the Eyelash Satisfaction Questionnaire

    PubMed Central

    Dang, Jeff; Cole, Jason C.; Burgess, Somali M.; Yang, Min; Daniels, Selena R.; Walt, John G.

    2016-01-01

    Background Patient-reported outcome (PRO) measures have been used to assess treatment benefit in a variety of therapeutic areas and are now becoming increasingly important in aesthetic research. Objectives The objective of the current study was to develop and validate a new PRO measure (Eyelash Satisfaction Questionnaire [ESQ]) to assess satisfaction with eyelash prominence. Methods The content of the questionnaire (including conceptual framework and questionnaire items) was generated by review of literature, participant interviews, and expert opinion. Cognitive interviews were conducted to pilot test the questionnaire. Psychometric properties of the questionnaire were examined in a combined sample of participants (n = 970) completing Internet- (n = 909) and paper-based (n = 61) versions. Item- and domain-level properties were examined using modern and classical psychometrics. Results Content-based analysis of qualitative data demonstrated the presence of 3 distinct domains (Length, Fullness, Overall Satisfaction; Confidence, Attractiveness, and Professionalism; and Daily Routine). Initial confirmatory factor analysis (CFA) results of 23 items revealed insufficient model-data fit (comparative fit index [CFI] of 0.86 and a non-normed fit index [NNFI] of 0.82). A revised model using 9 items (3 per domain) achieved appropriate fit (CFI of 0.99 and NNFI of 0.97). Analyses revealed measurement equivalence across the Internet- and paper-based versions. The 3 ESQ domains had strong internal consistency reliability (Cronbach's α [range] = 0.919-0.976) and adequate convergent and discriminant validity. Conclusions The ESQ was found to be a reliable and valid PRO measure for assessing satisfaction with eyelash prominence. Level of Evidence: 3 Therapeutic PMID:26691738

  1. Patient-reported outcome and quality of life instruments database (PROQOLID): frequently asked questions.

    PubMed

    Emery, Marie-Pierre; Perrier, Laure-Lou; Acquadro, Catherine

    2005-01-01

    The exponential development of Patient-Reported Outcomes (PRO) measures in clinical research has led to the creation of the Patient-Reported Outcome and Quality of Life Instruments Database (PROQOLID) to facilitate the selection process of PRO measures in clinical research. The project was initiated by Mapi Research Trust in Lyon, France. Initially called QOLID (Quality of Life Instruments Database), the project's purpose was to provide all those involved in health care evaluation with a comprehensive and unique source of information on PRO and HRQOL measures available through the Internet.PROQOLID currently describes more than 470 PRO instruments in a structured format. It is available in two levels, non-subscribers and subscribers, at http://www.proqolid.org. The first level is free of charge and contains 14 categories of basic useful information on the instruments (e.g. author, objective, original language, list of existing translations, etc.). The second level provides significantly more information about the instruments. It includes review copies of over 350 original instruments, 120 user manuals and 350 translations. Most are available in PDF format. This level is only accessible to annual subscribers. PROQOLID is updated in close collaboration with the instruments' authors on a regular basis. Fifty or more new instruments are added to the database annually.Today, all of the major pharmaceutical companies, prestigious institutions (such as the FDA, the NIH's National Cancer Institute, the U.S. Veterans Administration), dozens of universities, public institutions and researchers subscribe to PROQOLID on a yearly basis. More than 800 users per day routinely visit the database. PMID:15755325

  2. A longitudinal analysis of nursing home outcomes.

    PubMed Central

    Porell, F; Caro, F G; Silva, A; Monane, M

    1998-01-01

    OBJECTIVE: To investigate resident and facility attributes associated with long-term care health outcomes in nursing homes. DATA SOURCES: Quarterly Management Minutes Questionnaire (MMQ) survey data for Medicaid case-mix reimbursement of nursing homes in Massachusetts from 1991 to 1994, for specification of outcomes and resident attributes. Facility attributes are specified from cost report data. STUDY DESIGN: Multivariate logistic and "state-dependence" regression models are estimated for survival, ADL functional status, incontinence status, and mental status outcomes from longitudinal residence histories of Medicaid residents spanning 3 to 36 months in length. Outcomes are specified to be a function of resident demographic and diagnostic attributes and facility-level operating and nurse staffing attributes. PRINCIPAL FINDINGS: The estimated parameters for resident demographic and diagnostic attributes showed a great deal of construct validity with respect to clinical expectations regarding risk factors for adverse outcomes. Few facility attributes were associated with outcomes generally, and none was significantly associated with all four outcomes. CONCLUSIONS: The absence of uniform associations between facility attributes and the various long-term care health outcomes studied suggests that strong facility performance on one health outcome may coexist with much weaker performance on other outcomes. This has implications for the aggregation of individual facility performance measures on multiple outcomes and the development of overall outcome performance measures. PMID:9776939

  3. Effect of Sleep Disturbances on Quality of Life, Diabetes Self-Care Behavior, and Patient-Reported Outcomes.

    PubMed

    Chasens, Eileen R; Luyster, Faith S

    2016-02-01

    IN BRIEF Poor sleep quality and sleep disorders, particularly insomnia, obstructive sleep apnea, and restless legs syndrome, are prevalent among people with type 2 diabetes. Evidence suggests that coexisting diabetes and sleep disturbances are associated with decreases in quality of life, diabetes self-care behaviors, and patient-reported outcomes. Additional research is required to determine the effect of treatment of sleep disorders on patient-centered outcomes in people with type 2 diabetes. PMID:26912961

  4. Patient-reported Outcomes of Acupuncture for Symptom Control in Cancer.

    PubMed

    Thompson, Lora M A; Osian, Sarah Rausch; Jacobsen, Paul B; Johnstone, Peter A S

    2015-06-01

    Acupuncture is increasingly offered as a treatment option for managing cancer-related symptoms. In addition to randomized controlled trials, patient-reported outcomes may be needed to establish treatment effectiveness. This study retrospectively examined the symptoms and the satisfaction ratings of 90 patients receiving acupuncture at an integrative oncology clinic. At least two acupuncture sessions were completed by 72% of the sample. The prevalence rates of fatigue, pain, anxiety, physical distress, emotional distress, and poor quality of life before acupuncture were > 62%. Paired t tests revealed a significant reduction in symptoms from baseline until after the first acupuncture session and after the last session (p < 0.05). Fewer (21%) patients reported nausea, which was significantly reduced after the first session, but not the last session. Reductions represented clinically meaningful differences in 33-41% of patients after the first session and in 41-53% of patients after the last session for all symptoms, except nausea. A small subset of patients (0-8%) reported worsening symptoms after acupuncture. The majority were satisfied with the service. The results of this study suggest that acupuncture may be useful as an adjunct treatment for cancer symptom management. While high-quality trials are still needed to establish the treatment's efficacy, patients may benefit from these primarily safe, low-cost services. PMID:26100066

  5. Comparative Effectiveness of Etanercept and Adalimumab in Patient Reported Outcomes and Injection-Related Tolerability

    PubMed Central

    Navarro-Millán, Iris; Herrinton, Lisa J.; Chen, Lang; Harrold, Leslie; Liu, Liyan; Curtis, Jeffrey R.

    2016-01-01

    Objective To describe patient preferences in selecting specific biologics and compare clinical response using patient reported outcomes (PROs) among patients with rheumatoid arthritis (RA) started on different anti-tumor necrosis factor (TNF) therapies. Methods Participants were enrollees in Kaiser Permanente Northern California. Patients with RA who had at least two provider visits and started a new anti-TNF therapy from 10/2010–8/2011, were eligible for participation in this longitudinal study. Using a telephone survey, patient preferences in biologic selection and RAPID3, MDHAQ, and SF-12 scores were collected at baseline and at 6 months. Patient scores rating injection/infusion-site burning and stinging (ISBS) were collected at 6 months. Results In all, 267 patients with RA responded to the baseline survey, of whom 57% preferred an injectable biologic, 22% preferred an infused biologic, and 21% had no preference. Motivation for injectable biologics was convenience (92%) and for infusion therapy was dislike or lack of self-efficacy for self-injection (16%). After 6 months of treatment with anti-TNF, 70% of the 177 patients who answered the ISBS question reported ISBS with the last dose; on a scale of 1 (none) to 10 (worst), 41% of these reported a score of 2–5; and 29% reported a score of 6–10. Adalimumab users experienced 3.2 times (95% confidence interval 1.2–8.6) the level of ISBS that etanercept users experienced. There were no significant differences in RAPID3, MDHAQ, or SF-12 scores between etanercept or adalimumab initiators. Conclusion Convenience and fear of self-injection were important considerations to patients selecting a biologic drug. Although more convenient, adalimumab associated with more ISBS than did etanercept, and this rate was higher than reported in clinical trials. At 6 months, PROs did not differ between etanercept and adalimumab users. PMID:27007811

  6. Review of Electronic Patient-Reported Outcomes Systems Used in Cancer Clinical Care

    PubMed Central

    Jensen, Roxanne E.; Snyder, Claire F.; Abernethy, Amy P.; Basch, Ethan; Potosky, Arnold L.; Roberts, Aaron C.; Loeffler, Deena R.; Reeve, Bryce B.

    2014-01-01

    Purpose: The use of electronic patient-reported outcomes (PRO) systems is increasing in cancer clinical care settings. This review comprehensively identifies existing PRO systems and explores how systems differ in the administration of PRO assessments, the integration of information into the clinic workflow and electronic health record (EHR) systems, and the reporting of PRO information. Methods: Electronic PRO (e-PRO) systems were identified through a semistructured review of published studies, gray literature, and expert identification. System developers were contacted to provide detailed e-PRO system characteristics and clinical implementation information using a structured review form. Results: A total of 33 unique systems implemented in cancer clinical practice were identified. Of these, 81% provided detailed information about system characteristics. Two system classifications were established: treatment-centered systems designed for patient monitoring during active cancer treatment (n = 8) and patient-centered systems following patients across treatment and survivorship periods (n = 19). There was little consensus on administration, integration, or result reporting between these system types. Patient-centered systems were more likely to provide user-friendly features such as at-home assessments, integration into larger electronic system networks (eg, EHRs), and more robust score reporting options. Well-established systems were more likely to have features that increased assessment flexibility (eg, location, automated reminders) and better clinical integration. Conclusion: The number of e-PRO systems has increased. Systems can be programmed to have numerous features that facilitate integration of PRO assessment and routine monitoring into clinical care. Important barriers to system usability and widespread adoption include assessment flexibility, clinical integration, and high-quality data collection and reporting. PMID:24301843

  7. Establishing a population-based patient-reported outcomes study (PROMs) using national cancer registries across two jurisdictions: the Prostate Cancer Treatment, your experience (PiCTure) study

    PubMed Central

    Drummond, F J; Kinnear, H; Donnelly, C; O'Leary, E; O'Brien, K; Burns, R M; Gavin, A; Sharp, L

    2015-01-01

    Objective To establish an international patient-reported outcomes (PROMs) study among prostate cancer survivors, up to 18 years postdiagnosis, in two countries with different healthcare systems and ethical frameworks. Design A cross-sectional, postal survey of prostate cancer survivors sampled and recruited via two population-based cancer registries. Healthcare professionals (HCPs) evaluated patients for eligibility to participate. Questionnaires contained validated instruments to assess health-related quality of life and psychological well-being, including QLQ-C30, QLQ-PR25, EQ-5D-5L, 21-question Depression, Anxiety and Stress Scale (DASS-21) and the Decisional Regret Scale. Setting Republic of Ireland (RoI) and Northern Ireland (NI). Primary outcome measures Registration completeness, predictors of eligibility and response, data missingness, unweighted and weighted PROMs. Results Prostate cancer registration was 80% (95% CI 75% to 84%) and 91% (95% CI 89% to 93%) complete 2 years postdiagnosis in NI and RoI, respectively. Of 12 322 survivors sampled from registries, 53% (n=6559) were classified as eligible following HCP screening. In the multivariate analysis, significant predictors of eligibility were: being ≤59 years of age at diagnosis (p<0.001), short-term survivor (<5 years postdiagnosis; p<0.001) and from RoI (p<0.001). 3348 completed the questionnaire, yielding a 54% adjusted response rate. 13% of men or their families called the study freephone with queries for assistance with questionnaire completion or to talk about their experience. Significant predictors of response in multivariate analysis were: being ≤59 years at diagnosis (p<0.001) and from RoI (p=0.016). Mean number of missing questions in validated instruments ranged from 0.12 (SD 0.71; EQ-5D-5L) to 3.72 (SD 6.30; QLQ-PR25). Weighted and unweighted mean EQ-5D-5L, QLQ-C30 and QLQ-PR25 scores were similar, as were the weighted and unweighted prevalences of depression, anxiety and

  8. A Mobile Platform for Administering Questionnaires and Synchronizing Their Answers

    ERIC Educational Resources Information Center

    Ginardi, Maria Germana; Lanzola, Giordano

    2013-01-01

    This paper describes a platform for administering questionnaires on smart-phones and tablets. The project arises from the need of acquiring data for monitoring the outcomes of different homecare interventions. First a model has been defined for representing questionnaires, able to support adaptivity in the dialog with the user and enforce some…

  9. Self-Rated Competences Questionnaires from a Design Perspective

    ERIC Educational Resources Information Center

    Braun, Edith; Woodley, Alan; Richardson, John T. E.; Leidner, Bernhard

    2012-01-01

    This paper provides a theoretical review of self-rated competences questionnaires. This topic is influenced by the ongoing world-wide reform of higher education, which has led to a focus on the learner outcomes of higher education. Consequently, questionnaires on self-rated competences have increasingly been employed. However, self-ratings are…

  10. Matching State Goals to a Model of Outcomes and Indicators for Grade 8. Technical Report 16.

    ERIC Educational Resources Information Center

    Seppanen, Patricia; And Others

    A national survey of state-articulated student goals and outcomes led to the analysis of documents from 30 states for correspondence with the outcomes specified for grade 8 in the conceptual model developed by the National Center on Educational Outcomes for Students with Disabilities (NCEO). All of the 30 states' goal documents included statements…

  11. The public health hazards of risk avoidance associated with public reporting of risk adjusted outcomes in coronary intervention

    PubMed Central

    Resnic, Frederic S.; Welt, Frederick G. P.

    2009-01-01

    Public reporting of risk adjusted outcomes for percutaneous coronary interventional (PCI) procedures has been mandated in New York State for more than a decade. Over that time there has been a significant decline in the unadjusted mortality following such procedures. Massachusetts joined New York in 2003 as only the second state to require case level reporting of every coronary interventional procedure performed. In this review, we explore the differences in the populations reported by the two states, and consider possible risks of public reporting of clinical outcomes following PCI procedures including the risk of increasing conservatism in the treatment of the sickest patients. We offer a conceptual framework to understand the potential risk-averse behavior of interventional cardiologists subject to public reporting, and offer several proposals to counteract this potential deleterious effect of reporting programs. PMID:19264236

  12. Exploration, Development, and Validation of Patient-reported Outcomes in Antineutrophil Cytoplasmic Antibody–associated Vasculitis Using the OMERACT Process

    PubMed Central

    Robson, Joanna C.; Milman, Nataliya; Tomasson, Gunnar; Dawson, Jill; Cronholm, Peter F.; Kellom, Katherine; Shea, Judy; Ashdown, Susan; Boers, Maarten; Boonen, Annelies; Casey, George C.; Farrar, John T.; Gebhart, Don; Krischer, Jeffrey; Lanier, Georgia; McAlear, Carol A.; Peck, Jacqueline; Sreih, Antoine G.; Tugwell, Peter; Luqmani, Raashid A.; Merkel, Peter A.

    2016-01-01

    Objective Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) is a group of linked multisystem life- and organ-threatening diseases. The Outcome Measures in Rheumatology (OMERACT) vasculitis working group has been at the forefront of outcome development in the field and has achieved OMERACT endorsement of a core set of outcomes for AAV. Patients with AAV report as important some manifestations of disease not routinely collected through physician-completed outcome tools; and they rate common manifestations differently from investigators. The core set includes the domain of patient-reported outcomes (PRO). However, PRO currently used in clinical trials of AAV do not fully characterize patients’ perspectives on their burden of disease. The OMERACT vasculitis working group is addressing the unmet needs for PRO in AAV. Methods Current activities of the working group include (1) evaluating the feasibility and construct validity of instruments within the PROMIS (Patient-Reported Outcome Measurement Information System) to record components of the disease experience among patients with AAV; (2) creating a disease-specific PRO measure for AAV; and (3) applying The International Classification of Functioning, Disability and Health to examine the scope of outcome measures used in AAV. Results The working group has developed a comprehensive research strategy, organized an investigative team, included patient research partners, obtained peer-reviewed funding, and is using a considerable research infrastructure to complete these interrelated projects to develop evidence-based validated outcome instruments that meet the OMERACT filter of truth, discrimination, and feasibility. Conclusion The OMERACT vasculitis working group is on schedule to achieve its goals of developing validated PRO for use in clinical trials of AAV. (First Release September 1 2015; J Rheumatol 2015;42:2204–9; doi:10.3899/jrheum.141143) PMID:26329344

  13. Cultural adaptation: translatability assessment and linguistic validation of the patient-reported outcome instrument for irritable bowel syndrome with diarrhea

    PubMed Central

    Delgado-Herrera, Leticia; Lasch, Kathryn; Popielnicki, Ana; Nishida, Akito; Arbuckle, Rob; Banderas, Benjamin; Zentner, Susan; Gagainis, Ingrid; Zeiher, Bernhardt

    2016-01-01

    Background and objective Following a 2009 US Food and Drug Administration guidance, a new patient-reported outcome (PRO) instrument was developed to support end points in multinational clinical trials assessing irritable bowel syndrome with diarrhea (IBS-D) symptom severity. Our objective was to assess the translatability of the IBS-D PRO instrument into ten languages, and subsequently perform a cultural adaptation/linguistic validation of the questionnaire into Japanese and US Spanish. Materials and methods Translatability assessments of the US English version of the IBS-D PRO were performed by experienced PRO translators who were native speakers of each target language and currently residing in target-language countries. Languages were Chinese (People’s Republic of China), Dutch (the Netherlands), French (Belgium), German (Germany), Japanese (Japan), Polish (Poland), Portuguese (Brazil), Russian (Russia), Spanish (Mexico), and Spanish (US). The project team assessed the instrument to identify potential linguistic and/or cultural adaptation issues. After the issues identified were resolved, the instrument was translated into Spanish (US) and Japanese through a process of two forward translations, one reconciled translation, and one backward translation. The project team reviewed the translated versions before the instruments were evaluated by cognitive debriefing interviews with samples of five Spanish (US) and five Japanese IBS-D patients. Results Linguistic and cultural adaptation concerns identified during the translatability assessment required minor revisions, mainly the presentation of dates/times and word structure. During the cognitive debriefing interviews, two of five Spanish respondents misunderstood the term “bowel movement” to mean only diarrhea in the Spanish version. Consequently, the term was changed from “movimiento intestinal” to “evacuaciones”. None of the Japanese respondents identified issues with the Japanese version. Conclusion

  14. Detecting and measuring deprivation in primary care: development, reliability and validity of a self-reported questionnaire: the DiPCare-Q

    PubMed Central

    Bischoff, Thomas; Diserens, Esther-Amélie; Herzig, Lilli; Meystre-Agustoni, Giovanna; Panese, Francesco; Favrat, Bernard; Sass, Catherine; Bodenmann, Patrick

    2012-01-01

    Objectives Advances in biopsychosocial science have underlined the importance of taking social history and life course perspective into consideration in primary care. For both clinical and research purposes, this study aims to develop and validate a standardised instrument measuring both material and social deprivation at an individual level. Methods We identified relevant potential questions regarding deprivation using a systematic review, structured interviews, focus group interviews and a think-aloud approach. Item response theory analysis was then used to reduce the length of the 38-item questionnaire and derive the deprivation in primary care questionnaire (DiPCare-Q) index using data obtained from a random sample of 200 patients during their planned visits to an ambulatory general internal medicine clinic. Patients completed the questionnaire a second time over the phone 3 days later to enable us to assess reliability. Content validity of the DiPCare-Q was then assessed by 17 general practitioners. Psychometric properties and validity of the final instrument were investigated in a second set of patients. The DiPCare-Q was administered to a random sample of 1898 patients attending one of 47 different private primary care practices in western Switzerland along with questions on subjective social status, education, source of income, welfare status and subjective poverty. Results Deprivation was defined in three distinct dimensions: material (eight items), social (five items) and health deprivation (three items). Item consistency was high in both the derivation (Kuder-Richardson Formula 20 (KR20) =0.827) and the validation set (KR20 =0.778). The DiPCare-Q index was reliable (interclass correlation coefficients=0.847) and was correlated to subjective social status (rs=−0.539). Conclusion The DiPCare-Q is a rapid, reliable and validated instrument that may prove useful for measuring both material and social deprivation in primary care. PMID:22307103

  15. Prevalence, risk factors and outcome of childhood abuse reported by female university students in jeddah.

    PubMed

    Ibrahim, Nahla K; Jalali, Ekram A; Al-Ahmadi, Jawaher R; Al-Bar, Adnan A

    2008-01-01

    Child abuse constitutes all forms of physical and /or emotional ill treatment, sexual abuse, neglect or negligent treatment or commercial or other exploitation, resulting in actual or potential harm to the child's health, survival, development or dignity in the context of a relationship of responsibility, trust or power. The objective of the study was to determine the prevalence, types, main predictors and outcome of child abuse, retrospectively reported by female university students in Jeddah. A cross sectional study was conducted and the Standardized Arabic Version of Child Abuse Screening Tool for Young Adult (18-24 years old) was used. Ethical standards of confidentiality and freedom to participate were followed. Multistage stratified random sample was used with selection of 1,897 females. About two-thirds (68.3 %) of students reported exposure to some form of child abuse. Physical and emotional forms were recalled by 45.1 % & 50.6 % of students, respectively, while, 2.9 % reported exposure to forced contact sexual assault. Parents and siblings were the commonest perpetrators of both physical & emotional abuse, while other relatives and extra-familial persons were the main offenders of sexual violence. The predictors of exposure to three forms of abuse together were: existence of parent who hit the other (aOR= 2.54; 95 % CI: 1.88-3.42), non-university graduated mother (aOR =1.83; p outcomes of exposure to physical abuse were poor educational performance (aOR = 4.26; 95 % C.I.: 1.7-10.5), becoming suicidal prone (aOR =2.68; p

  16. Assessing the Psychological Changes of Gifted Students Attending a Residential High School with an Outcome Measurement

    ERIC Educational Resources Information Center

    Rollins, Marlon R.; Cross, Tracy L.

    2014-01-01

    This study examined the psychological changes that 272 students experienced while attending a residential school for gifted adolescents in the Midwest. This article shares the quantitative portion of a mixed-methods study. Outcome measurement data from the Youth Outcome Questionnaire Self-Report 2.0 (YOQ-SR) tracked students' level of…

  17. Usefulness of Patients-Reported Outcomes in Rheumatoid Arthritis Focus Group

    PubMed Central

    Amaya-Amaya, Jenny; Botello-Corzo, Diana; Calixto, Omar-Javier; Calderón-Rojas, Rolando; Domínguez, Aura-Maria; Cruz-Tapias, Paola; Montoya-Ortiz, Gladis; Mantilla, Ruben-Dario; Anaya, Juan-Manuel; Rojas-Villarraga, Adriana

    2012-01-01

    Objective. Patient-reported outcomes (PROs) have become an essential part of the assessment of patients with rheumatoid arthritis (RA). We aimed to evaluate the agreement and correlation between PROs and the physician's measurements. Methods. This was a cross-sectional analytical study in which 135 patients with RA were clinically evaluated during two different sessions of focus group interviews. Rheumatologist recorded 28 swollen (SJCs) and tender joint counts (TJCs). The patients filled out the PROs instruments (MDHAQ, RADAI, RAPID3, 4, and 5 and self-report articular index (SAI) diagram for pain and joint swelling). DAS28 was calculated (C-reactive protein). An adjusted multiple lineal regression model was done (DAS28 as dependent variable). Results. Highly significant agreements were found between SJC and TJC registered by the physician and patient. There was moderate correlation between DAS28 with patient SJC (r = 0.52), patient TJC (r = 0.55), RADAI (r = 0.56), RAPID3 (r = 0.52), RAPID4 (r = 0.56), RAPID5 (r = 0.66), and VAS-Global (r = 0.51). Likewise, we found moderate to high correlations between CDAI and SDAI with all variable measurements done by the patients. The resulting predictive equation was DAS28(CRP) = 2.02 + 0.037 × RAPID4 + 0.042× patient SJC. Conclusion. PROs applied in focus groups interview are a useful tool for managing patients with RA regardless of gender, educational level, and duration of disease. PMID:23097701

  18. Patient-reported outcomes before and after treatment of major depressive disorder.

    PubMed

    IsHak, Waguih William; Mirocha, James; Pi, Sarah; Tobia, Gabriel; Becker, Bret; Peselow, Eric D; Cohen, Robert M

    2014-06-01

    Patient reported outcomes (PROs) of quality of life (QoL), functioning, and depressive symptom severity are important in assessing the burden of illness of major depressive disorder (MDD) and to evaluate the impact of treatment. We sought to provide a detailed analysis of PROs before and after treatment of MDD from the large Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study. This analysis examines PROs before and after treatment in the second level of STAR*D. The complete data on QoL, functioning, and depressive symptom severity, were analyzed for each STAR*D level 2 treatment. PROs of QoL, functioning, and depressive symptom severity showed substantial impairments after failing a selective serotonin reuptake inhibitor trial using citalopram (level 1). The seven therapeutic options in level 2 had positive statistically (P values) and clinically (Cohen's standardized differences [Cohen's d]) significant impact on QoL, functioning, depressive symptom severity, and reduction in calculated burden of illness. There were no statistically significant differences between the interventions. However, a substantial proportion of patients still suffered from patient-reported QoL and functioning impairment after treatment, an effect that was more pronounced in nonremitters. PROs are crucial in understanding the impact of MDD and in examining the effects of treatment interventions, both in research and clinical settings. PMID:25152656

  19. Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience

    PubMed Central

    2014-01-01

    Patient-reported outcome (PRO) measures must provide evidence that their development followed a rigorous process for ensuring their content validity. To this end, the collection of data is performed through qualitative interviews that allow for the elicitation of in-depth spontaneous reports of the patients’ experiences with their condition and/or its treatment. This paper provides a review of qualitative research applied to PRO measure development. A clear definition of what is a qualitative research interview is given as well as information about the form and content of qualitative interviews required for developing PRO measures. Particular attention is paid to the description of interviewing approaches (e.g., semi-structured and in-depth interviews, individual vs. focus group interviews). Information about how to get prepared for a qualitative interview is provided with the description of how to develop discussion guides for exploratory or cognitive interviews. Interviewing patients to obtain knowledge regarding their illness experience requires interpersonal and communication skills to facilitate patients’ expression. Those skills are described in details, as well as the skills needed to facilitate focus groups and to interview children, adolescents and the elderly. Special attention is also given to quality assurance and interview training. The paper ends on ethical considerations since interviewing for the development of PROs is performed in a context of illness and vulnerability. Therefore, it is all the more important that, in addition to soliciting informed consent, respectful interactions be ensured throughout the interview process. PMID:24499454

  20. Using a Brief Parent-Report Measure to Track Outcomes for Children and Teens with ADHD.

    PubMed

    McCarthy, Alyssa; Asghar, Sunna; Wilens, Timothy; Romo, Stephanie; Kamin, Hayley; Jellinek, Michael; Murphy, Michael

    2016-06-01

    The Pediatric Symptom Checklist (PSC) is a widely used, parent-completed measure of children's emotional and behavioral functioning. Previous research has shown that the PSC and its subscales are responsive to patient progress over the course of psychiatric treatment. In this naturalistic study, parents and clinicians of 1736 patients aged 17 or younger completed standardized measures at intake and 3-month follow-up appointments. We assessed the 5-item PSC Attention Subscale (PSC-AS) as a longitudinal measure of attention-related symptoms in routine outpatient psychiatry treatment. Secondarily, we compared PSC-AS scores with clinician-reported diagnoses, psychomotor excitation symptoms, and overall functioning. Change scores on the PSC-AS were larger among patients with ADHD diagnoses than those with non-ADHD diagnoses. Comparisons between PSC-AS scores and clinician reports also showed acceptable levels of agreement. Given its effectiveness in tracking attention-related symptoms, the PSC may be particularly useful as a quality assurance or treatment outcome measure for clinicians treating ADHD. PMID:26271346

  1. The Accuracy of the Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q) in Classifying Severity of Impairment: A Brief Report

    ERIC Educational Resources Information Center

    Murray, A. L.; McKenzie, K.

    2014-01-01

    Background: Severity of intellectual disability (ID) is associated with a range of outcomes for the individual and having an indication of severity can help inform support needs. Previous research has not evaluated whether screening tools can accurately ascertain severity category in addition to providing a red flag for the presence of ID.…

  2. Income and patient-reported outcomes (PROs) after primary total knee arthroplasty

    PubMed Central

    2013-01-01

    Background To assess whether income is associated with patient-reported outcomes (PROs) after primary total knee arthroplasty (TKA). Methods We used prospectively collected data from the Mayo Clinic Total Joint Registry to assess the association of income with index knee functional improvement, moderate to severe pain and moderate to severe activity limitation at 2-year and 5-year follow-up after primary TKA using multivariable-adjusted logistic regression analyses. Results There were 7, 139 primary TKAs at 2 years and 4, 234 at 5 years. In multivariable-adjusted analyses, at 2-year follow-up, compared to income > US$45, 000, lower incomes of ≤ US$35, 000 and > US$35, 000 to 45, 000 were associated (1) significantly with moderate to severe pain with an odds ratio (OR) 0.61 (95% CI 0.40 to 0.94) (P = 0.02) and 0.68 (95% CI 0.49 to 0.94) (P = 0.02); and (2) trended towards significance for moderate to severe activity limitation with OR 0.78 (95% CI 0.60 to 1.02) (P = 0.07) and no significant association with OR 0.96 (95% CI 0.78 to 1.20) (P = 0.75), respectively. At 5 years, odds were not statistically significantly different by income, although numerically they favored lower income. In multivariable-adjusted analyses, overall improvement in knee function was rated as 'better' slightly more often at 2 years by patients with income in the ≤ US$35, 000 range compared to patients with income > US$45, 000, with an OR 1.9 (95% CI 1.0 to 3.6) (P = 0.06). Conclusions We found that patients with lower income had better pain outcomes compared to patients with higher income. There was more improvement in knee function, and a trend towards less overall activity limitation after primary TKA in lower income patients compared to those with higher incomes. Insights into mediators of these relationships need to be investigated to understand how income influences outcomes after TKA. PMID:23497272

  3. Patient-reported outcomes and considerations in the management of COPD: focus on aclidinium

    PubMed Central

    Lopez-Campos, Jose Luis; Calero, Carmen; Lopez-Ramirez, Cecilia; Asensio-Cruz, Maria Isabel; Márquez-Martín, Eduardo; Ortega-Ruiz, Francisco

    2015-01-01

    Chronic obstructive pulmonary disease (COPD) is a complex heterogeneous disease, in which several factors combine to give the final clinical expression. Both early and more recent studies have shown that forced expiratory volume in one second (FEV1), despite being an extremely important parameter to predict the progression of the disease, is a poor surrogate marker for symptoms perception. Accordingly, patient-reported outcomes (PROs) have gained popularity as a measure of the impact of treatment from the patients’ perspective, since they represent the individuals’ perception of their health status, beyond any physiological limitations. Several such PROs, therefore, are currently included in multidimensional COPD evaluation. This multidimensional approach helps identify different patient types and individualize, up to a certain point, pharmacological treatment. In this multidimensional approach it is important to highlight the importance of long-acting bronchodilators in COPD treatment strategies. Long-acting bronchodilators are cost-effective and have been shown to achieve the greatest functional and clinical improvements in COPD. As a result, long-acting bronchodilators are now the main pharmacological treatment for COPD at all stages of the disease. Until recently, tiotropium was the leading bronchodilator for the treatment of COPD. The clinical development of this medication, unprecedented in inhaled therapy, involved tens of thousands of patients and yielded consistent outcomes in terms of lung function, symptoms, quality of life, exacerbations, and prognosis. However, new long-acting bronchodilators have recently been developed or are currently under development. In this review, we evaluate the effects of aclidinium bromide, a novel long-acting bronchodilator, on PROs in COPD. Aclidinium is a novel long-acting muscarinic antagonist with a good safety profile for the treatment of COPD, and has proven efficacy in both objective functional measurements and

  4. Report from the kick-off meeting of the Cochrane Skin Group Core Outcome Set Initiative (CSG-COUSIN).

    PubMed

    Schmitt, J; Deckert, S; Alam, M; Apfelbacher, C; Barbaric, J; Bauer, A; Chalmers, J; Chosidow, O; Delamere, F; Doney, E; Eleftheriadou, V; Grainge, M; Johannsen, L; Kottner, J; Le Cleach, L; Mayer, A; Pinart, M; Prescott, L; Prinsen, C A C; Ratib, S; Schlager, J G; Sharma, M; Thomas, K S; Weberschock, T; Weller, K; Werner, R N; Wild, T; Wilkes, S R; Williams, H C

    2016-02-01

    A major obstacle of evidence-based clinical decision making is the use of nonstandardized, partly untested outcome measurement instruments. Core Outcome Sets (COSs) are currently developed in different medical fields to standardize and improve the selection of outcomes and outcome measurement instruments in clinical trials, in order to pool results of trials or to allow indirect comparison between interventions. A COS is an agreed minimum set of outcomes that should be measured and reported in all clinical trials of a specific disease or trial population. The international, multidisciplinary Cochrane Skin Group Core Outcome Set Initiative (CSG-COUSIN) aims to develop and implement COSs in dermatology, thus making trial evidence comparable and, herewith, more useful for clinical decision making. The inaugural meeting of CSG-COUSIN was held on 17-18 March 2015 in Dresden, Germany, as the exclusive theme of the Annual Cochrane Skin Group Meeting. In total, 29 individuals representing a broad mix of different stakeholder groups, professions, skills and perspectives attended. This report provides a description of existing COS initiatives in dermatology, highlights current methodological challenges in COS development, and presents the concept, aims and structure of CSG-COUSIN. PMID:26779929

  5. Beliefs about emotions as a metacognitive construct: initial development of a self-report questionnaire measure and preliminary investigation in relation to emotion regulation.

    PubMed

    Manser, Rachel; Cooper, Myra; Trefusis, Jo

    2012-01-01

    Metacognitive theory, amongst other theories, gives an important role to beliefs about mental states, including beliefs about emotions, in the maintenance of distress. Mentalization theory as well as the dialectical behaviour therapy and emotion-focused therapy literature specifies particular beliefs thought to be related to emotion dysregulation and therefore to a label of borderline personality disorder. The current study aimed to develop a questionnaire to measure the beliefs about emotions as specified by this literature and to test the relationship of this new measure to various aspects of emotion regulation in a non-clinical sample of 289 participants. A factor analysis extracted six factors, which described beliefs about emotions as (a) overwhelming and uncontrollable; (b) shameful and irrational; (c) invalid and meaningless; (d) useless; (e) damaging; and (f) contagious. The final measure showed some promising psychometric properties. All of the questionnaire subscales were related to aspects of emotion dysregulation including distress, borderline personality disorder symptoms and behaviours associated with dysregulation of emotion, suggesting that beliefs about emotions could be an important metacognitive construct involved in the ability to regulate emotions. Beliefs about emotions may be a useful direct or indirect target for treatment of difficulties regulating emotions, and this could be achieved through the use of various therapeutic modalities. PMID:21374759

  6. Report from the third international consensus meeting to harmonise core outcome measures for atopic eczema/dermatitis clinical trials (HOME)

    PubMed Central

    Chalmers, JR; Schmitt, J; Apfelbacher, C; Dohil, M; Eichenfield, LF; Simpson, EL; Singh, J; Spuls, P; Thomas, KS; Admani, S; Aoki, V; Ardeleanu, M; Barbarot, S; Berger, T; Bergman, JN; Block, J; Borok, N; Burton, T; Chamlin, SL; Deckert, S; DeKlotz, CC; Graff, LB; Hanifin, JM; Hebert, AA; Humphreys, R; Katoh, N; Kisa, RM; Margolis, DJ; Merhand, S; Minnillo, R; Mizutani, H; Nankervis, H; Ohya, Y; Rodgers, P; Schram, ME; Stalder, JF; Svensson, A; Takaoka, R; Teper, A; Tom, WL; von Kobyletzki, L; Weisshaar, E; Zelt, S; Williams, HC

    2014-01-01

    Summary This report provides a summary of the third meeting of the Harmonising Outcome Measures for Eczema (HOME) initiative held in San Diego, CA, U.S.A., 6–7 April 2013 (HOME III). The meeting addressed the four domains that had previously been agreed should be measured in every eczema clinical trial: clinical signs, patient-reported symptoms, long-term control and quality of life. Formal presentations and nominal group techniques were used at this working meeting, attended by 56 voting participants (31 of whom were dermatologists). Significant progress was made on the domain of clinical signs. Without reference to any named scales, it was agreed that the intensity and extent of erythema, excoriation, oedema/papulation and lichenification should be included in the core outcome measure for the scale to have content validity. The group then discussed a systematic review of all scales measuring the clinical signs of eczema and their measurement properties, followed by a consensus vote on which scale to recommend for inclusion in the core outcome set. Research into the remaining three domains was presented, followed by discussions. The symptoms group and quality of life groups need to systematically identify all available tools and rate the quality of the tools. A definition of long-term control is needed before progress can be made towards recommending a core outcome measure. What's already known about this topic? Many different scales have been used to measure eczema, making it difficult to compare trials in meta-analyses and hampering improvements in clinical practice. HOME core outcome measures must pass the OMERACT (Outcome Measures in Rheumatology) filter of truth (validity), discrimination (sensitivity to change and responsiveness) and feasibility (ease of use, costs, time to perform and interpret). It has been previously agreed as part of the consensus process that four domains should be measured by the core outcomes: clinical signs, patient-reported

  7. Retrospective reports of developmental stressors, syndemics, and their association with sexual risk outcomes among gay men.

    PubMed

    Tulloch, Tyler G; Rotondi, Nooshin K; Ing, Stanley; Myers, Ted; Calzavara, Liviana M; Loutfy, Mona R; Hart, Trevor A

    2015-10-01

    Gay and bisexual men (GBM) continue to have a disproportionately higher HIV incidence than any other group in Canada and the United States. This study examined how multiple co-occurring psychosocial problems, also known as a syndemic, contribute to high-risk sexual behavior among GBM. It also examined the impact of early life adversity on high-risk sexual behavior as mediated by syndemic severity. A sample of 239 GBM completed self-report questionnaires at baseline and 6-month follow-up. Syndemic variables included depression, polysubstance use, and intimate partner violence. Early life adversity variables measured retrospectively included physical and verbal bullying by peers and physical and sexual abuse by adults. A Cochran-Armitage trend test revealed a proportionate increase between number of syndemic problems and engagement in high-risk sex (p < .0001), thereby supporting syndemic theory. All early life adversity variables were positively correlated with number of syndemic problems. A bootstrap mediation analysis revealed indirect effects of two types of early life adversity on high-risk sex via syndemic severity: verbal bullying by peers and physical abuse by adults. There was also an overall effect of physical bullying by peers on high-risk sexual behavior, but no specific direct or indirect effects were observed. Consistent with syndemic theory, results provide evidence that certain types of early life adversity impact high-risk sex later in life via syndemic problems. Behavioral interventions to reduce sexual risk among GBM should address anti-gay discrimination experienced before adulthood as well as adult psychological problems. PMID:26089251

  8. The effectiveness of providing peer benchmarked feedback to hip replacement surgeons based on patient-reported outcome measures—results from the PROFILE (Patient-Reported Outcomes: Feedback Interpretation and Learning Experiment) trial: a cluster randomised controlled study

    PubMed Central

    Boyce, Maria B; Browne, John P

    2015-01-01

    Objective To test whether providing surgeons with peer benchmarked feedback about patient-reported outcomes is effective in improving patient outcomes. Design Cluster randomised controlled trial. Setting Secondary care—Ireland. Participants Surgeons were recruited through the Irish Institute of Trauma and Orthopaedic Surgery, and patients were recruited in hospitals prior to surgery. We randomly allocated 21 surgeons and 550 patients. Intervention Surgeons in the intervention group received peer benchmarked patient-reported outcome measures (PROMs) feedback and education. Main outcome variable Postoperative Oxford Hip Score (OHS). Results Primary outcome data were available for 11 intervention surgeons with responsibility for 230 patients and 10 control surgeons with responsibility for 228 patients. The mean postoperative OHS for the intervention group was 40.8 (95% CI 39.8 to 41.7) and for the control group was 41.9 (95% CI 41.1 to 42.7). The adjusted effect estimate was −1.1 (95% CI −2.4 to 0.2, p=0.09). Secondary outcomes were the Hip Osteoarthritis Outcome Score (HOOS), EQ-5D and the proportion of patients reporting a problem after surgery. The mean postoperative HOOS for the intervention group was 36.2 and for the control group was 37.1. The adjusted effect estimate was −1.1 (95% CI −2.4 to 0.3, p=0.1). The mean postoperative EQ-5D for the intervention group was 0.85 and for the control group was 0.87. The adjusted effect estimate was −0.02 (95% CI −0.05 to 0.008, p=0.2). 27% of intervention patients and 24% of control patients reported at least one complication after surgery (adjusted OR=1.2, 95% CI 0.6 to 2.3, p=0.6). Conclusions Outcomes for patients operated on by surgeons who had received peer benchmarked PROMs data were not statistically different from the outcomes of patients operated on by surgeons who did not receive feedback. PROMs information alone seems to be insufficient to identify opportunities for quality improvement. Trial

  9. Prevalence of swallowing and speech problems in daily life after chemoradiation for head and neck cancer based on cut-off scores of the patient-reported outcome measures SWAL-QOL and SHI.

    PubMed

    Rinkel, Rico N; Verdonck-de Leeuw, Irma M; Doornaert, Patricia; Buter, Jan; de Bree, Remco; Langendijk, Johannes A; Aaronson, Neil K; Leemans, C René

    2016-07-01

    The objective of this study is to assess swallowing and speech outcome after chemoradiation therapy for head and neck cancer, based on the patient-reported outcome measures Swallowing Quality of Life Questionnaire (SWAL-QOL) and Speech Handicap Index (SHI), both provided with cut-off scores. This is a cross-sectional study. Department of Otolaryngology/Head and Neck Surgery of a University Medical Center. Sixty patients, 6 months to 5 years after chemoradiation for head and neck squamous cell carcinoma. Swallowing Quality of Life Questionnaire (SWAL-QOL) and SHI, both validated in Dutch and provided with cut-off scores. Associations were tested between the outcome measures and independent variables (age, gender, tumor stage and site, and radiotherapy technique, time since treatment, comorbidity and food intake). Fifty-two patients returned the SWAL-QOL and 47 the SHI (response rate 87 and 78 %, respectively). Swallowing and speech problems were present in 79 and 55 %, respectively. Normal food intake was noticed in 45, 35 % had a soft diet and 20 % tube feeding. Patients with soft diet and tube feeding reported more swallowing problems compared to patients with normal oral intake. Tumor subsite was significantly associated with swallowing outcome (less problems in larynx/hypopharynx compared to oral/oropharynx). Radiation technique was significantly associated with psychosocial speech problems (less problems in patients treated with IMRT). Swallowing and (to a lesser extent) speech problems in daily life are frequently present after chemoradiation therapy for head and neck cancer. Future prospective studies will give more insight into the course of speech and swallowing problems after chemoradiation and into efficacy of new radiation techniques and swallowing and speech rehabilitation programs. PMID:26071622

  10. Psychometric validation of the Confidence in Performing Sexual Intercourse Questionnaire and Difficulty in Performing Sexual Intercourse Questionnaire.

    PubMed

    Hayes, R P; Seftel, A; Rosen, R C; Althof, S; Shen, W; Shih, T; Sontag, A

    2014-01-01

    The objective of this study was to perform psychometric testing of two new patient-reported outcome instruments (PROs), the Confidence in Performing Sexual Intercourse Questionnaire (CPSIQ) and the Difficulty in Performing Sexual Intercourse Questionnaire (DPSIQ). The new PROs were administered at non-drug, run-in, baseline and end point in men with erectile dysfunction (ED) participating in a randomized clinical trial of ED treatment (Study 1, n=291) and two times within 2 weeks to men with ED participating in a web-based survey (Study 2, n=71). Psychometric tests included factor analysis, internal consistency and test-retest reliability, construct validity and responsiveness. Analysis of data from Study 1 participants (74% ≤65 years, 83% Caucasian and 75% with moderate ED) suggested one-factor solutions for both PROs with Cronbach's α >0.88. CPSIQ and DPSIQ total scores discriminated between ED severity groups showed worsening after a 4-week non-drug, run-in period, and showed improvement after 12 weeks of ED treatment (all, P<0.05). Intraclass correlation coefficients calculated for the CPSIQ and DPSIQ, using data from Study 2 participants (82% ≤65 years, 90% Caucasian and 66% with mild ED), were 0.56 and 0.83, respectively. The CPSIQ and DPSIQ show potential for augmenting existing treatment outcome measures used in the evaluation of ED treatment. PMID:24335748

  11. Patient-Reported Outcome Results From the Open-Label Phase III AURELIA Trial Evaluating Bevacizumab-Containing Therapy for Platinum-Resistant Ovarian Cancer

    PubMed Central

    Stockler, Martin R.; Hilpert, Felix; Friedlander, Michael; King, Madeleine T.; Wenzel, Lari; Lee, Chee Khoon; Joly, Florence; de Gregorio, Nikolaus; Arranz, José Angel; Mirza, Mansoor Raza; Sorio, Roberto; Freudensprung, Ulrich; Sneller, Vesna; Hales, Gill; Pujade-Lauraine, Eric

    2014-01-01

    Purpose To determine the effects of bevacizumab on patient-reported outcomes (PROs; secondary end point) in the AURELIA trial. Patients and Methods Patients with platinum-resistant ovarian cancer were randomly assigned to chemotherapy alone (CT) or with bevacizumab (BEV-CT). PROs were assessed using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire–Ovarian Cancer Module 28 (EORTC QLQ-OV28) and Functional Assessment of Cancer Therapy–Ovarian Cancer symptom index (FOSI) at baseline and every two or three cycles (8/9 weeks) until disease progression. The primary PRO hypothesis was that more patients receiving BEV-CT than CT would achieve at least a 15% (≥ 15-point) absolute improvement on the QLQ-OV28 abdominal/GI symptom subscale (items 31-36) at week 8/9. Patients with missing week 8/9 questionnaires were included as unimproved. Questionnaires from all assessments until disease progression were analyzed using mixed-model repeated-measures (MMRM) analysis. Sensitivity analyses were used to determine the effects of differing assumptions and methods for missing data. Results Baseline questionnaires were available from 89% of 361 randomly assigned patients. More BEV-CT than CT patients achieved a ≥ 15% improvement in abdominal/GI symptoms at week 8/9 (primary PRO end point, 21.9% v 9.3%; difference, 12.7%; 95% CI, 4.4 to 20.9; P = .002). MMRM analysis covering all time points also favored BEV-CT (difference, 6.4 points; 95% CI, 1.3 to 11.6; P = .015). More BEV-CT than CT patients achieved ≥ 15% improvement in FOSI at week 8/9 (12.2% v 3.1%; difference, 9.0%; 95% CI, 2.9% to 15.2%; P = .003). Sensitivity analyses gave similar results and conclusions. Conclusion Bevacizumab increased the proportion of patients achieving a 15% improvement in patient-reported abdominal/GI symptoms during chemotherapy for platinum-resistant ovarian cancer. PMID:24687829

  12. Regenerative Endodontic Treatment: Report of Two Cases with Different Clinical Management and Outcomes

    PubMed Central

    Khoshkhounejad, Mehrfam; Shokouhinejad, Noushin

    2015-01-01

    Endodontic intervention in necrotic immature permanent teeth is usually a clinical challenge. With appropriate case selection, regenerative treatment can be effective, providing a desirable outcome. However, there is still no consensus on the optimal disinfection protocol or the method to achieve predictable clinical outcome. This article presents two cases of regenerative treatment in necrotic immature teeth, using mineral trioxide aggregate (MTA) and BiodentineTM as coronal barriers and different irrigants, which led to different clinical outcomes. PMID:26884781

  13. Regenerative Endodontic Treatment: Report of Two Cases with Different Clinical Management and Outcomes.

    PubMed

    Khoshkhounejad, Mehrfam; Shokouhinejad, Noushin; Pirmoazen, Salma

    2015-06-01

    Endodontic intervention in necrotic immature permanent teeth is usually a clinical challenge. With appropriate case selection, regenerative treatment can be effective, providing a desirable outcome. However, there is still no consensus on the optimal disinfection protocol or the method to achieve predictable clinical outcome. This article presents two cases of regenerative treatment in necrotic immature teeth, using mineral trioxide aggregate (MTA) and Biodentine(TM) as coronal barriers and different irrigants, which led to different clinical outcomes. PMID:26884781

  14. Questionnaire Translation and Questionnaire Validation: Are They the Same?

    ERIC Educational Resources Information Center

    Griffee, Dale T.

    The purpose of this paper is to give evidence for the thesis that if teachers using a questionnaire as a data collection instrument have the questionnaire items translated from one language into another, they cannot assume that the translated items are valid simply because they were translated. Even if the original questionnaire items were…

  15. Utility of the social communication questionnaire-current and social responsiveness scale as teacher-report screening tools for autism spectrum disorders.

    PubMed

    Schanding, G Thomas; Nowell, Kerri P; Goin-Kochel, Robin P

    2012-08-01

    Limited research exists regarding the role of teachers in screening for Autism Spectrum Disorders (ASD). The current study examined the use of the Social Communication Questionnaire (SCQ) and Social Responsiveness Scale (SRS) as completed by parents and teachers about school-age children from the Simons Simplex Collection. Using the recommended cutoff scores in the manuals and extant literature, the teacher-completed SCQ and SRS yielded lower sensitivity and specificity values than would be desirable; however, lowering the cutoff scores on both instruments improved sensitivity and specificity to more adequate levels for screening purposes. Using the adjusted cutoff scores, the SRS teacher form appears to be a slightly better screener than the SCQ. Implications and limitations are discussed, as well as areas for future research. PMID:22143742

  16. Cross-cultural development and psychometric evaluation of a patient-reported health-related quality of life questionnaire for adults with haemophilia.

    PubMed

    Rentz, A; Flood, E; Altisent, C; Bullinger, M; Klamroth, R; Garrido, R P; Scharrer, I; Schramm, W; Gorina, E

    2008-09-01

    Co-morbidities of haemophilia, such as arthropathy and blood-borne infections, can adversely affect the quality of life of adult patients with haemophilia. The purpose of this study was to develop and validate a haemophilia-specific health-related quality of life questionnaire for adults (HAEMO-QoL-A). Subjects with varying severities of haemophilia completed the HAEMO-QoL-A at baseline and 4 weeks. Other assessments included the SF-36 and Health Assessment Questionnaire - Functional Disability Index (HAQ-FDI). Two-hundred and twenty-one participants completed the 41-item HAEMO-QoL-A covering six domains (Physical Functioning, Role Functioning, Worry, Consequences of Bleeding, Emotional Impact and Treatment Concerns) and four independent items. Internal consistency was good-to-excellent (Cronbach's alpha-range: 0.75-0.95). Test-retest reproducibility was good, with intraclass correlation coefficients >0.80 except for the Emotional Impact domain (0.79). Concurrent validity between the HAEMO-QoL-A total and subscale scores and all SF-36 subscale scores were generally good (correlations range: 0.13-0.87). Significant correlations between the HAEMO-QoL-A and the HAQ-FDI ranged from -0.14 to -0.69. There were non-significant correlations with the Treatment Concerns subscale and with the Worry subscale. The HAEMO-QoL-A discriminated significantly between adults with haemophilia by severity and HIV status. The Physical Functioning subscale discriminated between patients receiving prophylactic or on-demand therapy. The HAEMO-QoL-A is a valid and reliable instrument for assessing quality of life in haemophilia patients. PMID:18665853

  17. Modeling Associations between Principals’ Reported Indoor Environmental Quality and Students’ Self-Reported Respiratory Health Outcomes Using GLMM and ZIP Models

    PubMed Central

    Toyinbo, Oluyemi; Matilainen, Markus; Turunen, Mari; Putus, Tuula; Shaughnessy, Richard; Haverinen-Shaughnessy, Ulla

    2016-01-01

    Background: The aim of this paper was to examine associations between school building characteristics, indoor environmental quality (IEQ), and health responses using questionnaire data from both school principals and students. Methods: From 334 randomly sampled schools, 4248 sixth grade students from 297 schools participated in a questionnaire. From these schools, 134 principals returned questionnaires concerning 51 IEQ related questions of their school. Generalized linear mixed models (GLMM) were used to study the associations between IEQ indicators and existence of self-reported upper respiratory symptoms, while hierarchical Zero Inflated Poisson (ZIP)—models were used to model the number of symptoms. Results: Significant associations were established between existence of upper respiratory symptoms and unsatisfactory classroom temperature during the heating season (ORs 1.45 for too hot and cold, and 1.27 for too cold as compared to satisfactory temperature) and dampness or moisture damage during the year 2006–2007 (OR: 1.80 as compared to no moisture damage), respectively. The number of upper respiratory symptoms was significantly associated with inadequate ventilation and dampness or moisture damage. A higher number of missed school days due to respiratory infections were reported in schools with inadequate ventilation (RR: 1.16). Conclusions: The school level IEQ indicator variables described in this paper could explain a relatively large part of the school level variation observed in the self-reported upper respiratory symptoms and missed school days due to respiratory infections among students. PMID:27043595

  18. Collecting Patient-Reported Outcomes: Lessons from the California Joint Replacement Registry

    PubMed Central

    Chenok, Kate; Teleki, Stephanie; SooHoo, Nelson F.; Huddleston, James; Bozic, Kevin J.

    2015-01-01

    Context: While patient-reported outcomes (PROs) have long been used for research, recent technology advancements make it easier to collect patient feedback and use it for patient care. Despite the promise and appeal of PROs, substantial barriers to widespread adoption remain—including challenges in interpreting privacy regulations, educating patients and physicians about the power that PRO collection can provide to patient-centered care. Case Description: This article describes lessons learned from the California Joint Replacement Registry’s (CJRR) five-year effort to collect PROs from patients undergoing total hip and total knee replacement surgeries. CJRR is a voluntary, multi-institutional registry in California that collects clinical and device information, as well as PROs from patients undergoing total hip arthroplasty (THA) and total knee arthroplasty (TKA) surgeries. Proposed Solutions: The CJRR encountered and developed solutions to overcome several key issues: (1) limitations of electronic PRO collection, (2) challenges in patient recruitment and tracking, (3) challenges in encouraging patients to complete PRO surveys, (4) real and perceived administrative burden to clinic and hospital staff, (5) surgeon engagement, and (6) survey costs. Conclusion: The CJRR’s field experience can inform growing numbers of providers and researchers who seek to more fully understand the impact of care from the patient’s perspective. In addition, the authors believe that these challenges can best be addressed through a combination of policy changes and increased incentives. PMID:26793737

  19. Successful Pregnancy Outcome in A Case of Eisenmenger Syndrome: A Rare Case Report

    PubMed Central

    Samal, Sunil Kumar

    2014-01-01

    Pregnancy complicated with Eisenmenger syndrome is associated with high risk to the fetus as well as the mother. There is approximately 50% risk of sudden maternal death, frequently occuring a few days postpartum and the overall fetal wastage is reported to be up to 75%. Patients with Eisenmenger syndrome are advised to refrain from pregnancy or to terminate pregnancy by the end of first trimester itself. Management of these patients requires a co-ordinated multi-specialist care when such pregnancies reach a stage where safe termination is not advisable. However, inspite of all the risks, a few patients deliver successfully with a good maternal and neonatal outcome. We present a 27-year-old unbooked G3P1A1L0 admitted at 34 wk gestation with Eisenmenger syndrome. She was treated medically during pregnancy, underwent elective Caesarean section at 37 wk of gestation delivered a healthy baby and was subsequently discharged on the 10th postoperative day without any serious complications. PMID:25478416

  20. Idiopathic neonatal pneumoperitoneum with favorable outcome: A case report and review

    PubMed Central

    He, Tao-Zhen; Xu, Chang; Ji, Yi; Sun, Xiao-Yan; Liu, Min

    2015-01-01

    Neonatal pneumoperitoneum is a surgical emergency indicative of gastrointestinal perforation that requires immediate treatment to prevent death. There have been non-surgical conditions secondary to neonatal pneumoperitoneum (e.g., mechanical ventilation, pulmonary diseases and pneumatosis cystoides intestinalis) that neonates were able to overcome without the need for abdominal exploration. Idiopathic pneumoperitoneum, although similar to perforation of the alimentary tract and the previously mentioned non-surgical conditions, is a more rare and benign condition that does not yet have a definite cause. Hence, inexperienced surgeons may have a difficult time providing the right treatment for idiopathic pneumoperitoneum. We report a case of a neonate with a massive pneumoperitoneum who obtained a favorable outcome without surgical intervention. Nonetheless, the cause of pneumoperitoneum remains unclear. We hypothesize that the right sized perforation (range: 2 mm to 4 mm in diameter) at the anterior wall of the stomach is needed for pneumoperitoneum to occur. As the baby cries (aerophagia), the air in the stomach accumulates until it can enter the intraperitoneal cavity through the leak compressed by gastric peristalsis, hence forming a large pneumoperitoneum. Small amounts of gastric juice are able to penetrate the gastric wall; therefore, no signs or symptoms of peritonitis occur. The gastric leak self-seals, preventing further passage of the air, allowing the intraperitoneal free gas to dissipate gradually. This case demonstrated that laparotomy can be avoided in neonates with idiopathic pneumoperitoneum if a timely diagnosis is established. PMID:26034380