Ambulatory surgery center market share and rates of outpatient surgery in the elderly.

PubMed

Hollenbeck, Brent K; Hollingsworth, John M; Dunn, Rodney L; Zaojun Ye; Birkmeyer, John D

2010-12-01

Relative to outpatient surgery in hospital settings, ambulatory surgery centers (ASCs) are more efficient and associated with a lower cost per case. However, these facilities may also spur higher overall procedure utilization and thus lead to greater overall health care costs. The authors used the State Ambulatory Surgery Database from the State of Florida to identify Medicare-aged patients undergoing 4 common ambulatory procedures in 2006, including knee arthroscopy, cystoscopy, cataract removal, and colonoscopy. Hospital service areas (HSAs) were characterized according to ASC market share, that is, the proportion of residents undergoing outpatient surgery in these facilities. The authors then examined relationships between ASC market share and rates of each procedure. Age-adjusted rates of ambulatory surgery ranged from 190.5 cases per 1000 to 320.8 cases per 1000 in HSAs with low and high ASC market shares, respectively (P < .01). For all 4 procedures, adjusted rates of procedures were significantly higher in HSAs with the highest ASC market share. The greatest difference, both in relative and absolute terms, was observed for patients undergoing cystoscopy. In areas of high ASC market share, the age-adjusted rate of cystoscopy was nearly 3-fold higher than in areas with low ASC market share (34.5 vs 11.9 per 1000 population; P < .01). The presence of an ASC is associated with higher utilization of common outpatient procedures in the elderly. Whether ASCs are meeting unmet clinical demand or spurring overutilization is not clear.

Achieving visibility? Use of non-verbal communication in interactions between patients and pharmacists who do not share a common language.

PubMed

Stevenson, Fiona

2014-06-01

Despite the seemingly insatiable interest in healthcare professional-patient communication, less attention has been paid to the use of non-verbal communication in medical consultations. This article considers pharmacists' and patients' use of non-verbal communication to interact directly in consultations in which they do not share a common language. In total, 12 video-recorded, interpreted pharmacy consultations concerned with a newly prescribed medication or a change in medication were analysed in detail. The analysis focused on instances of direct communication initiated by either the patient or the pharmacist, despite the presence of a multilingual pharmacy assistant acting as an interpreter. Direct communication was shown to occur through (i) the demonstration of a medical device, (ii) the indication of relevant body parts and (iii) the use of limited English. These connections worked to make patients and pharmacists visible to each other and thus to maintain a sense of mutual involvement in consultations within which patients and pharmacists could enact professionally and socially appropriate roles. In a multicultural society this work is important in understanding the dynamics involved in consultations in situations in which language is not shared and thus in considering the development of future research and policy. © 2014 The Author. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL (SHIL).

Transforming nurse-patient relationships-A qualitative study of nurse self-disclosure in mental health care.

PubMed

Unhjem, Jeanette Varpen; Vatne, Solfrid; Hem, Marit Helene

2018-03-01

To describe what and why nurses self-disclose to patients in mental health care. Self-disclosure is common, but controversial and difficult to delineate. Extant research suggests that self-disclosure might have several potentially beneficial effects on therapeutic alliance and treatment outcome for patients in mental health care, but results are often mixed and limited by definitional inconsistencies. Multi-site study with purposive sampling and source triangulation. Qualitative descriptive study including data from 16 nurses taking part in participant observation, individual interviews and focus group interviews. Separate analyses resulted in four themes addressing the research question of what nurses self-disclose, and one main theme and four subthemes addressing why nurses self-disclose. The content of self-disclosure was captured in the four themes: Immediate family, Interests and activities, Life experiences and Identity. In addition, results showed that disclosures were common among the nurses. Self-disclosure's potential to transform the nurse-patient relationship, making it more open, honest, close, reciprocal and equal, was the overarching reason why nurses shared personal information. The nurses also chose to self-disclose to share existential and everyday sentiments, to give real-life advice, because it felt natural and responsive to patients' question to do so. Nurse self-disclosure is common and cover a variety of personal information. Nurses have several reasons for choosing to self-disclose, most of which are connected to improving the nurse-patient relationship. Self-disclosure controversy can make it difficult for nurses to know whether they should share personal information or not. Insights into the diversity of and reasons for nurse self-disclosure can help with deliberations on self-disclosure. © 2017 John Wiley & Sons Ltd.

Levels of Social Sharing and Clinical Implications for Severe Social Withdrawal in Patients with Personality Disorders

PubMed Central

Colle, Livia; Pellecchia, Giovanni; Moroni, Fabio; Carcione, Antonino; Nicolò, Giuseppe; Semerari, Antonio; Procacci, Michele

2017-01-01

Social sharing capacities have attracted attention from a number of fields of social cognition and have been variously defined and analyzed in numerous studies. Social sharing consists in the subjective awareness that aspects of the self’s experience are held in common with other individuals. The definition of social sharing must take a variety of elements into consideration: the motivational element, the contents of the social sharing experience, the emotional responses it evokes, the behavioral outcomes, and finally, the circumstances and the skills which enable social sharing. The primary objective of this study is to explore some of the diverse forms of human social sharing and to classify them according to levels of complexity. We identify four different types of social sharing, categorized according to the nature of the content being shared and the complexity of the mindreading skills required. The second objective of this study is to consider possible applications of this graded model of social sharing experience in clinical settings. Specifically, this model may support the development of graded, focused clinical interventions for patients with personality disorders characterized by severe social withdrawal. PMID:29255430

Individual responsibility as ground for priority setting in shared decision-making.

PubMed

Sandman, Lars; Gustavsson, Erik; Munthe, Christian

2016-10-01

Given healthcare resource constraints, voices are being raised to hold patients responsible for their health choices. In parallel, there is a growing trend towards shared decision-making, aiming to empower patients and give them more control over healthcare decisions. More power and control over decisions is usually taken to mean more responsibility for them. The trend of shared decision-making would therefore seem to strengthen the case for invoking individual responsibility in the healthcare priority setting. To analyse whether the implementation of shared decision-making would strengthen the argument for invoking individual responsibility in the healthcare priority setting using normative analysis. Shared decision-making does not constitute an independent argument in favour of employing individual responsibility since these notions rest on different underlying values. However, if a health system employs shared decision-making, individual responsibility may be used to limit resource implications of accommodating patient preferences outside professional standards and goals. If a healthcare system employs individual responsibility, high level dynamic shared decision-making implying a joint deliberation resulting in a decision where both parties are willing to revise initial standpoints may disarm common objections to the applicability of individual responsibility by virtue of making patients more likely to exercise adequate control of their own actions. However, if communication strategies applied in the shared decision-making are misaligned to the patient's initial capacities, arguments against individual responsibility might, on the other hand, gain strength. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

A Review of Shared Decision-Making and Patient Decision Aids in Radiation Oncology.

PubMed

Woodhouse, Kristina Demas; Tremont, Katie; Vachani, Anil; Schapira, Marilyn M; Vapiwala, Neha; Simone, Charles B; Berman, Abigail T

2017-06-01

Cancer treatment decisions are complex and may be challenging for patients, as multiple treatment options can often be reasonably considered. As a result, decisional support tools have been developed to assist patients in the decision-making process. A commonly used intervention to facilitate shared decision-making is a decision aid, which provides evidence-based outcomes information and guides patients towards choosing the treatment option that best aligns with their preferences and values. To ensure high quality, systematic frameworks and standards have been proposed for the development of an optimal aid for decision making. Studies have examined the impact of these tools on facilitating treatment decisions and improving decision-related outcomes. In radiation oncology, randomized controlled trials have demonstrated that decision aids have the potential to improve patient outcomes, including increased knowledge about treatment options and decreased decisional conflict with decision-making. This article provides an overview of the shared-decision making process and summarizes the development, validation, and implementation of decision aids as patient educational tools in radiation oncology. Finally, this article reviews the findings from decision aid studies in radiation oncology and offers various strategies to effectively implement shared decision-making into clinical practice.

Cluster headache with trigeminal neuralgia. An uncommon association that may be more than coincidental.

PubMed

Diamond, S; Freitag, F G; Cohen, J S

1984-02-01

Cluster headache and trigeminal neuralgia (tic douloureux) share a common pattern of exacerbation and remission of pain that is described in similar terms by patients. Although the treatment of these conditions is markedly different, the results of adequate prophylaxis can be extremely impressive in both. The physician who treats headache patients should be aware of the common characteristics of each condition and of the possibility of their concomitant occurrence.

Gene networks underlying convergent and pleiotropic phenotypes in a large and systematically-phenotyped cohort with heterogeneous developmental disorders.

PubMed

Andrews, Tallulah; Meader, Stephen; Vulto-van Silfhout, Anneke; Taylor, Avigail; Steinberg, Julia; Hehir-Kwa, Jayne; Pfundt, Rolph; de Leeuw, Nicole; de Vries, Bert B A; Webber, Caleb

2015-03-01

Readily-accessible and standardised capture of genotypic variation has revolutionised our understanding of the genetic contribution to disease. Unfortunately, the corresponding systematic capture of patient phenotypic variation needed to fully interpret the impact of genetic variation has lagged far behind. Exploiting deep and systematic phenotyping of a cohort of 197 patients presenting with heterogeneous developmental disorders and whose genomes harbour de novo CNVs, we systematically applied a range of commonly-used functional genomics approaches to identify the underlying molecular perturbations and their phenotypic impact. Grouping patients into 408 non-exclusive patient-phenotype groups, we identified a functional association amongst the genes disrupted in 209 (51%) groups. We find evidence for a significant number of molecular interactions amongst the association-contributing genes, including a single highly-interconnected network disrupted in 20% of patients with intellectual disability, and show using microcephaly how these molecular networks can be used as baits to identify additional members whose genes are variant in other patients with the same phenotype. Exploiting the systematic phenotyping of this cohort, we observe phenotypic concordance amongst patients whose variant genes contribute to the same functional association but note that (i) this relationship shows significant variation across the different approaches used to infer a commonly perturbed molecular pathway, and (ii) that the phenotypic similarities detected amongst patients who share the same inferred pathway perturbation result from these patients sharing many distinct phenotypes, rather than sharing a more specific phenotype, inferring that these pathways are best characterized by their pleiotropic effects.

The NCI Genomic Data Commons as an engine for precision medicine.

PubMed

Jensen, Mark A; Ferretti, Vincent; Grossman, Robert L; Staudt, Louis M

2017-07-27

The National Cancer Institute Genomic Data Commons (GDC) is an information system for storing, analyzing, and sharing genomic and clinical data from patients with cancer. The recent high-throughput sequencing of cancer genomes and transcriptomes has produced a big data problem that precludes many cancer biologists and oncologists from gleaning knowledge from these data regarding the nature of malignant processes and the relationship between tumor genomic profiles and treatment response. The GDC aims to democratize access to cancer genomic data and to foster the sharing of these data to promote precision medicine approaches to the diagnosis and treatment of cancer.

Shared Decision Making and Autonomy Among US Participants with Multiple Sclerosis in the NARCOMS Registry

PubMed Central

Thomas, Nina; Tyry, Tuula; Fox, Robert J.; Salter, Amber

2017-01-01

Background: Treatment decisions in multiple sclerosis (MS) are affected by many factors and are made by the patient, doctor, or both. With new disease-modifying therapies (DMTs) emerging, the complexity surrounding treatment decisions is increasing, further emphasizing the importance of understanding decision-making preferences. Methods: North American Research Committee on Multiple Sclerosis (NARCOMS) Registry participants completed the Fall 2014 Update survey, which included the Control Preferences Scale (CPS). The CPS consists of five images showing different patient/doctor roles in treatment decision making. The images were collapsed to three categories: patient-centered, shared, and physician-centered decision-making preferences. Associations between decision-making preferences and demographic and clinical factors were evaluated using multivariable logistic regression. Results: Of 7009 participants, 79.3% were women and 93.5% were white (mean [SD] age, 57.6 [10.3] years); 56.7% reported a history of relapses. Patient-centered decision making was most commonly preferred by participants (47.9%), followed by shared decision making (SDM; 42.8%). SDM preference was higher for women and those taking DMTs and increased with age and disease duration (all P < .05). Patient-centered decisions were most common for respondents not taking a DMT at the time of the survey and were preferred by those who had no DMT history compared with those who had previously taken a DMT (P < .0001). There was no difference in SDM preference by current MS disease course after adjusting for other disease-related factors. Conclusions: Responders reported most commonly considering their doctor's opinion before making a treatment decision and making decisions jointly with their doctor. DMT use, gender, and age were associated with decision-making preference. PMID:29270088

[Shared decision making].

PubMed

Floer, B; Schnee, M; Böcken, J; Streich, W; Kunstmann, W; Isfort, J; Butzlaff, M

2004-10-29

The demand for integration of patients in medical decisions becomes more and more obvious. Little is known about whether patients are willing and ready to share therapeutic decisions. So far information is lacking, whether existing communication skills of both -- patients and physicians -- are sufficient for shared decision making (SDM). This paper presents new data on patients perspectives regarding SDM. Standardized survey of 3058 German speaking people (1565 females, 1493 males), aged 18-79 years, a population based random sample of an access panel (pool of german households available for specific surveys) regarding the following topics: medical decision making in practice, communication skills and behaviour of physicians. A majority of patients approved the model of SDM. However, some subgroups of patients, especially older patients, were less interested in the concept of SDM. Necessary communication skills which may help patients to participate in decision making were used rather scarcely. Patients who approved the model of SDM more often experienced a common and trustful exchange of information. Most patients favour the concept of SDM. The communication skills necessary for this process are to be promoted and extended. Research on patients' preferences and their participation in health care reform should be intensified. Academic and continuous medical education should focus on knowledge transfer to patients.

Complementary and Alternative Therapies in ALS

PubMed Central

Bedlack, Richard S.; Joyce, Nanette; Carter, Gregory T.; Pagononi, Sabrina; Karam, Chafic

2015-01-01

Synopsis Given the severity of their illness and lack of effective disease modifying agents, it is not surprising that most patients with ALS consider trying complementary and alternative therapies. Some of the most commonly considered alternative therapies include special diets, nutritional supplements, cannabis, acupuncture, chelation and energy healing. This chapter reviews these in detail. We also describe 3 models by which physicians may frame discussions about alternative therapies: paternalism, autonomy and shared decision making. Finally, we review a program called ALSUntangled which using shared shared decision making to review alternative therapies for ALS. PMID:26515629

Instrumental support to facilitate hepatitis C treatment adherence: working around shortfalls in shared-care.

PubMed

Sublette, Victoria A; Hopwood, Max; George, Jacob; Smith, Sian K; Perry, Kathryn Nicholson; McCaffery, Kirsten; Douglas, Mark W

2015-01-01

Adherence to treatment for hepatitis C virus (HCV) infection is associated with the successful eradication of infection. However, patients often have difficulty adhering to HCV treatment because of factors such as the psychiatric side effects of regimens and social disadvantage. Commonly, health professionals including specialist physicians, nurses, social workers and psychologists work together under a multidisciplinary model of shared-care to support patients' adherence to HCV treatment. In some HCV treatment clinics, shared-care is not always available, or only partially implemented and this has implications for patient adherence. To explore the facilitators of adherence, an interview-based study was conducted in 2012 with a purposive sample of Australian physicians and nurses (N = 20). The findings reveal that when comprehensive shared-care was limited or unavailable, physicians and nurses filled in the gaps by assuming roles outside of their expertise to help patients adhere to HCV treatment. Physicians and nurses applied instrumental support strategies based on psychosocial interventions, namely patient advocacy, pragmatic problem-solving, treatment engagement and emotional support. These strategies were provided by dedicated physicians and nurses to address shortfalls in multidisciplinary shared-care. Although these interventions were reported to assist adherence, there is an increased risk of complications when physicians and nurses move beyond the bounds of their disciplinary training, for example, to assess and manage patients' psychiatric side effects or advocate on their behalf for social services. Future research should measure the effectiveness of instrumental support strategies on HCV treatment adherence, and explore the costs associated with physicians and nurses providing instrumental support in the absence of comprehensive multidisciplinary shared-care.

Anonymization of Administrative Billing Codes with Repeated Diagnoses Through Censoring

PubMed Central

Tamersoy, Acar; Loukides, Grigorios; Denny, Joshua C.; Malin, Bradley

2010-01-01

Patient-specific data from electronic medical records (EMRs) is increasingly shared in a de-identified form to support research. However, EMRs are susceptible to noise, error, and variation, which can limit their utility for reuse. One way to enhance the utility of EMRs is to record the number of times diagnosis codes are assigned to a patient when this data is shared. This is, however, challenging because releasing such data may be leveraged to compromise patients’ identity. In this paper, we present an approach that, to the best of our knowledge, is the first that can prevent re-identification through repeated diagnosis codes. Our method transforms records to preserve privacy while retaining much of their utility. Experiments conducted using 2676 patients from the EMR system of the Vanderbilt University Medical Center verify that our method is able to retain an average of 95.4% of the diagnosis codes in a common data sharing scenario. PMID:21347085

The neglected topic: presentation of cost information in patient decision AIDS.

PubMed

Blumenthal-Barby, J S; Robinson, Emily; Cantor, Scott B; Naik, Aanand D; Russell, Heidi Voelker; Volk, Robert J

2015-05-01

Costs are an important component of patients' decision making, but a comparatively underemphasized aspect of formal shared decision making. We hypothesized that decision aids also avoid discussion of costs, despite their being tools designed to facilitate shared decision making about patient-centered outcomes. We sought to define the frequency of cost-related information and identify the common modes of presenting cost and cost-related information in the 290 decision aids catalogued in the Ottawa Hospital Research Institute's Decision Aid Library Inventory (DALI) system. We found that 56% (n = 161) of the decision aids mentioned cost in some way, but only 13% (n = 37) gave a specific price or range of prices. We identified 9 different ways in which cost was mentioned. The most common approach was as a "pro" of one of the treatment options (e.g., "you avoid the cost of medication"). Of the 37 decision aids that gave specific prices or ranges of prices for treatment options, only 2 were about surgery decisions despite the fact that surgery decision aids were the most common. Our findings suggest that presentation of cost information in decision aids is highly variable. Evidence-based guidelines should be developed by the International Patient Decision Aid Standards (IPDAS) Collaboration. © The Author(s) 2015.

Frequent falls and confusion: recurrent hypoglycemia in a patient with tuberous sclerosis complex.

PubMed

Comninos, Alexander N; Yang, Lisa; Abbara, Ali; Dhillo, Waljit S; Bassett, J H Duncan; Todd, Jeannie F

2018-05-01

Recurrent hypoglycemia is common, but its presentation is often insidious resulting in delays in diagnosis and significant morbidity. We describe a case of an insulinoma presenting with falls and confusion in a patient with tuberous sclerosis, demonstrating the importance of early hypoglycemia identification and a potential shared molecular pathogenesis.

Morbid and Insight Poetry: A Glimpse at Schizophrenia through the Window of Poetry

ERIC Educational Resources Information Center

Bakare, Muideen Owolabi

2009-01-01

Creativity, language, and psychotic disorders may share a common neurological and evolutionary background. These processes are uniquely human and may converge in poetic expression that illuminates the inner world of patients suffering from schizophrenia. Two types of poetry that may be written by patients with schizophrenia are identified as…

MedBlock: Efficient and Secure Medical Data Sharing Via Blockchain.

PubMed

Fan, Kai; Wang, Shangyang; Ren, Yanhui; Li, Hui; Yang, Yintang

2018-06-21

With the development of electronic information technology, electronic medical records (EMRs) have been a common way to store the patients' data in hospitals. They are stored in different hospitals' databases, even for the same patient. Therefore, it is difficult to construct a summarized EMR for one patient from multiple hospital databases due to the security and privacy concerns. Meanwhile, current EMRs systems lack a standard data management and sharing policy, making it difficult for pharmaceutical scientists to develop precise medicines based on data obtained under different policies. To solve the above problems, we proposed a blockchain-based information management system, MedBlock, to handle patients' information. In this scheme, the distributed ledger of MedBlock allows the efficient EMRs access and EMRs retrieval. The improved consensus mechanism achieves consensus of EMRs without large energy consumption and network congestion. In addition, MedBlock also exhibits high information security combining the customized access control protocols and symmetric cryptography. MedBlock can play an important role in the sensitive medical information sharing.

The Role of Patient Activation in Preferences for Shared Decision Making: Results From a National Survey of U.S. Adults.

PubMed

Smith, Samuel G; Pandit, Anjali; Rush, Steven R; Wolf, Michael S; Simon, Carol J

2016-01-01

Studies investigating preferences for shared decision making (SDM) have focused on associations with sociodemographic variables, with few investigations exploring patient factors. We aimed to investigate the relationship between patient activation and preferences for SDM in 6 common medical decisions among a nationally representative cross-sectional survey of American adults. Adults older than 18 were recruited online (n = 2,700) and by telephone (n = 700). Respondents completed sociodemographic assessments and the Patient Activation Measure. They were also asked whether they perceived benefit (yes/no) in SDM in 6 common medical decisions. Nearly half of the sample (45.9%) reached the highest level of activation (Level 4). Activation was associated with age (p < .001), higher income (p = .001), higher education (p = .010), better self-rated health (p < .001), and fewer chronic conditions (p = .050). The proportion of people who agreed that SDM was beneficial varied from 53.1% (deciding the necessity of a diagnostic test) to 71.8% (decisions associated with making lifestyle changes). After we controlled for participant characteristics, higher activation was associated with greater perceived benefit in SDM across 4 of the 6 decisions. Preferences for SDM varied among 6 common medical scenarios. Low patient activation is an important barrier to SDM that could be ameliorated through the development of behavioral interventions.

Common T cell receptor clonotype in lacrimal glands and labial salivary glands from patients with Sjögren's syndrome.

PubMed Central

Matsumoto, I; Tsubota, K; Satake, Y; Kita, Y; Matsumura, R; Murata, H; Namekawa, T; Nishioka, K; Iwamoto, I; Saitoh, Y; Sumida, T

1996-01-01

Sjogren's syndrome (SS) is an autoimmune disease characterized by lymphocytic infiltration into lacrimal and salivary glands leading to symptomatic dry eyes and mouth. Immunohistological studies have clarified that the majority of infiltrating lymphocytes around the lacrimal glands and labial salivary glands are CD4 positive alphabeta T cells. To analyze the pathogenesis of T cells infiltrating into lacrimal and labial salivary glands, we examined T cell clonotype of these cells in both glands from four SS patients using PCR-single-strand conformation polymorphism (SSCP) and a sequencing method. SSCP analysis showed that some infiltrating T cells in both glands expand clonally, suggesting that the cells proliferate by antigen-driven stimulation. Intriguingly, six to sixteen identical T cell receptor (TCR) Vbeta genes were commonly found in lacrimal glands and labial salivary glands from individual patients. This indicates that some T cells infiltrating into both glands recognize the shared epitopes on autoantigens. Moreover, highly conserved amino acid sequence motifs were found in the TCR CDR3 region bearing the same TCR Vbeta family gene from four SS patients, supporting the notion that the shared epitopes on antigens are limited. In conclusion, these findings suggest that some autoreactive T cells infiltrating into the lips and eyes recognized restricted epitopes of a common autoantigen in patients with SS. PMID:8621782

Event Reports Promoting Root Cause Analysis.

PubMed

Pandit, Swananda; Gong, Yang

2016-01-01

Improving health is the sole objective of medical care. Unfortunately, mishaps or patient safety events happen during the care. If the safety events were collected effectively, they would help identify patterns, underlying causes, and ultimately generate proactive and remedial solutions for prevention of recurrence. Based on the AHRQ Common Formats, we examine the quality of patient safety incident reports and describe the initial data requirement that can support and accelerate effective root cause analysis. The ultimate goal is to develop a knowledge base of patient safety events and their common solutions which can be readily available for sharing and learning.

Developmental delay and connective tissue disorder in four patients sharing a common microdeletion at 6q13-14.

PubMed

Van Esch, Hilde; Rosser, Elisabeth M; Janssens, Sandra; Van Ingelghem, Ingrid; Loeys, Bart; Menten, Bjorn

2010-10-01

Interstitial deletions of the long arm of chromosome 6 are rare, and most reported cases represent large, cytogenetically detectable deletions. The implementation of array comparative genome hybridisation in the diagnostic work-up of patients presenting with congenital disorders, including developmental delay, has enabled identification of many patients with smaller chromosomal imbalances. In this report, the cases are presented of four patients with a de novo interstitial deletion of chromosome 6q13-14, resulting in a common microdeletion of 3.7 Mb. All presented with developmental delay, mild dysmorphism and signs of lax connective tissue. Interestingly, the common deleted region harbours 16 genes, of which COL12A1 is a good candidate for the connective tissue pathology.

[A commonly seen cause of abdominal pain: abdominal cutaneous nerve entrapment syndrome].

PubMed

Solmaz, Ilker; Talay, Mustafa; Tekindur, Şükrü; Kurt, Ercan

2012-01-01

Although abdominal cutaneous nerve entrapment syndrome (ACNES) is accepted as a rare condition, it is a syndrome that should be diagnosed more commonly when the clinical signs cannot explain the cause of abdominal pain. Abdominal pain is commonly considered by physicians to be based on intra-abdominal causes. Consequently, redundant tests and consultations are requested for these patients, and unnecessary surgical procedures may be applied. Patients with this type of pain are consulted to many clinics, and because their definitive diagnoses cannot be achieved, they are assessed as psychiatric patients. Actually, a common cause of abdominal wall pain is nerve entrapment on the lateral edge of the rectus abdominis muscle. In this paper, we would like to share information about the diagnosis and treatment of a patient who, prior to presenting to us, had applied to different clinics for chronic abdominal pain and had undergone many tests and consultations; abdominal surgery was eventually decided.

Lay Crowd-Sourced Expertise (LCE) and Its Influence on the New Role of Patients: Ethical and Societal Issues.

PubMed

Lamas, Eugenia; Salinas, Rodrigo; Ferrer, Marcela; Bousquet, Cedric; Vuillaume, Dominique

2016-01-01

The emergence of social media on the Internet allows patients to discuss about their chronic diseases within online communities sharing common interests. This allows patients to gather other patients' experience, and gain new knowledge that is usually not shared by healthcare professionals. In this context, further studies are required on the actual impact of the use of social networks on the quality of life of patients participating in these online communities, focusing on the evolving role and impact of Lay Crowdsourced expertise (LCE) in improving disease management and control. We present a study on a large number of posts from social networks of different online communities. This study allowed us to choose four pathologies, with distinctive characteristics relevant for our future analysis, and to define the themes that will be covered in future work by online questionnaires. The analysis of responses from patients, who volunteer to participate, will help us in exploring how interactions between patients, on these online communities, may help them to gain useful information for managing their conditions and improving their quality of life. Furthermore, we will identify new ethical issues that arise in the sharing of health data.

Dreaming and cognition in patients with frontotemporal dysfunction.

PubMed

Paiva, Teresa; Bugalho, Paulo; Bentes, Carla

2011-12-01

Individuals with Parkinson's disease (PD) and temporal lobe epilepsy (TLE) have hallucinations and mild cognitive dysfunction. The objective of this work was to study dreams in PD and TLE patients using a common functional model of dream production involving the limbic and paralimbic structures. Dreams were characterised in early-stage PD (19 males) and TLE patients (52) with dream diaries classified by the Hall van de Castle system and were compared with matched controls. In PD, there were significant differences between patients' dreams and those of controls: animals, physical aggression, and a befriender were more common in patients, and aggressor and bodily misfortunes were less common. The dreams of patients with frontal dysfunction showed more aggressive features. TLE patients had lower recall than PD patients and a higher proportion of dreams involving family and familiar settings, lower proportions involving success, and a higher incidence of frontal dysfunction. The dreams of PD and TLE patients share important features. Copyright © 2011. Published by Elsevier Inc.

Complex Decision-Making in Heart Failure: A Systematic Review and Thematic Analysis.

PubMed

Hamel, Aimee V; Gaugler, Joseph E; Porta, Carolyn M; Hadidi, Niloufar Niakosari

Heart failure follows a highly variable and difficult course. Patients face complex decisions, including treatment with implantable cardiac defibrillators, mechanical circulatory support, and heart transplantation. The course of decision-making across multiple treatments is unclear yet integral to providing informed and shared decision-making. Recognizing commonalities across treatment decisions could help nurses and physicians to identify opportunities to introduce discussions and support shared decision-making. The specific aims of this review are to examine complex treatment decision-making, specifically implantable cardiac defibrillators, ventricular assist device, and cardiac transplantation, and to recognize commonalities and key points in the decisional process. MEDLINE, CINAHL, PsycINFO, and Web of Science were searched for English-language studies that included qualitative findings reflecting the complexity of heart failure decision-making. Using a 3-step process, findings were synthesized into themes and subthemes. Twelve articles met criteria for inclusion. Participants included patients, caregivers, and clinicians and included decisions to undergo and decline treatment. Emergent themes were "processing the decision," "timing and prognostication," and "considering the future." Subthemes described how participants received and understood information about the therapy, making and changing a treatment decision, timing their decision and gauging health status outcomes in the context of their decision, the influence of a life or death decision, and the future as a factor in their decisional process. Commonalities were present across therapies, which involved the timing of discussions, the delivery of information, and considerations of the future. Exploring this further could help support patient-centered care and optimize shared decision-making interventions.

Deciding together? Best interests and shared decision-making in paediatric intensive care.

PubMed

Birchley, Giles

2014-09-01

In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child's best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child's interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances.

An academic-health service partnership in nursing: lessons from the field.

PubMed

Granger, Bradi B; Prvu-Bettger, Janet; Aucoin, Julia; Fuchs, Mary Ann; Mitchell, Pamela H; Holditch-Davis, Diane; Roth, Deborah; Califf, Robert M; Gilliss, Catherine L

2012-03-01

To describe the development of an academic-health services partnership undertaken to improve use of evidence in clinical practice. Academic health science schools and health service settings share common elements of their missions: to educate, participate in research, and excel in healthcare delivery, but differences in the business models, incentives, and approaches to problem solving can lead to differences in priorities. Thus, academic and health service settings do not naturally align their leadership structures or work processes. We established a common commitment to accelerate the appropriate use of evidence in clinical practice and created an organizational structure to optimize opportunities for partnering that would leverage shared resources to achieve our goal. A jointly governed and funded institute integrated existing activities from the academic and service sectors. Additional resources included clinical staff and student training and mentoring, a pilot research grant-funding program, and support to access existing data. Emergent developments include an appreciation for a wider range of investigative methodologies and cross-disciplinary teams with skills to integrate research in daily practice and improve patient outcomes. By developing an integrated leadership structure and commitment to shared goals, we developed a framework for integrating academic and health service resources, leveraging additional resources, and forming a mutually beneficial partnership to improve clinical outcomes for patients. Structurally integrated academic-health service partnerships result in improved evidence-based patient care delivery and in a stronger foundation for generating new clinical knowledge, thus improving patient outcomes. © 2012 Sigma Theta Tau International.

The neurologic evaluation of patients with low-tension glaucoma.

PubMed

Corbett, J J; Phelps, C D; Eslinger, P; Montague, P R

1985-08-01

One hypothesized cause of low-tension glaucoma is chronic or intermittent ischemia of the optic nerve. Since the optic nerve and brain are both parts of the central nervous system and share a common blood supply, the authors wondered if patients with low-tension glaucoma might also have clinical or radiographic evidence of cerebral atrophy. In this study, 27 patients with low-tension glaucoma were examined using neurobehavioral testing, electroencephalography, computerized tomographic scan, neurological history, and physical examination. In only a small number of patients were these tests abnormal. However, 12 of the 27 patients gave a history of common or classic migraine. This unexpected finding raises the possibility that migraine-related ischemia might be the pathogenic mechanism in some cases of low-tension glaucoma.

Utilization and Safety of Common Over-the-Counter Dietary/Nutritional Supplements, Herbal Agents, and Homeopathic Compounds for Disease Prevention.

PubMed

Trivedi, Ruchir; Salvo, Marissa C

2016-09-01

Dietary supplements are commonly used by patients as part of their medical care plan. Often clinicians may not be aware of their use, because patients do not always consider these to be medications. All clinicians need to continually ask patients about their use of dietary supplements when collecting a medication history. Dietary supplements and prescription medications often share similar enzymatic pathways for their metabolism. These interactions may lead to severe adverse reactions. This article reviews available evidence for a variety of dietary supplements in select disease categories. Copyright © 2016 Elsevier Inc. All rights reserved.

The Undiagnosed Diseases Network: Accelerating Discovery about Health and Disease.

PubMed

Ramoni, Rachel B; Mulvihill, John J; Adams, David R; Allard, Patrick; Ashley, Euan A; Bernstein, Jonathan A; Gahl, William A; Hamid, Rizwan; Loscalzo, Joseph; McCray, Alexa T; Shashi, Vandana; Tifft, Cynthia J; Wise, Anastasia L

2017-02-02

Diagnosis at the edges of our knowledge calls upon clinicians to be data driven, cross-disciplinary, and collaborative in unprecedented ways. Exact disease recognition, an element of the concept of precision in medicine, requires new infrastructure that spans geography, institutional boundaries, and the divide between clinical care and research. The National Institutes of Health (NIH) Common Fund supports the Undiagnosed Diseases Network (UDN) as an exemplar of this model of precise diagnosis. Its goals are to forge a strategy to accelerate the diagnosis of rare or previously unrecognized diseases, to improve recommendations for clinical management, and to advance research, especially into disease mechanisms. The network will achieve these objectives by evaluating patients with undiagnosed diseases, fostering a breadth of expert collaborations, determining best practices for translating the strategy into medical centers nationwide, and sharing findings, data, specimens, and approaches with the scientific and medical communities. Building the UDN has already brought insights to human and medical geneticists. The initial focus has been on data sharing, establishing common protocols for institutional review boards and data sharing, creating protocols for referring and evaluating patients, and providing DNA sequencing, metabolomic analysis, and functional studies in model organisms. By extending this precision diagnostic model nationally, we strive to meld clinical and research objectives, improve patient outcomes, and contribute to medical science. Copyright © 2017 American Society of Human Genetics. All rights reserved.

Building a team through a strategic planning process.

PubMed

Albert, Debra; Priganc, Dave

2014-01-01

Strategic planning is a process often left to senior hospital leadership, with limited input from unit-level, bedside patient care providers. This frequent approach to strategic planning misses the opportunity to engage a wide range of employees, build a shared sense of commitment, produce a collaborative team environment, and to generate greater acceptance of the plan. The Patient Care Services division at the University of Chicago Medicine used a strategic planning process that incorporated 360-degree input from both within the Patient Care Services division and outside of the division. The result is a strategic vision and plan that, shaped by broad-based input from both internal and external constituencies, is strengthened by the team that emerged from the process. Through the process of identifying a common understanding of the group's future direction, a shared purpose was created that transcended traditional professional boundaries and shaped a cohesive team focused on effective and efficient patient care. Now, with a focused strategic plan and a team centered on a shared purpose, the team is beginning to effectively deliver on the plan.

Collaborative Help in Chronic Disease Management: Supporting Individualized Problems

PubMed Central

Huh, Jina; Ackerman, Mark S.

2013-01-01

Coping with chronic illness disease is a long and lonely journey, because the burden of managing the illness on a daily basis is placed upon the patients themselves. In this paper, we present our findings for how diabetes patient support groups help one another find individualized strategies for managing diabetes. Through field observations of face-to-face diabetes support groups, content analysis of an online diabetes community, and interviews, we found several help interactions that are critical in helping patients in finding individualized solutions. Those are: (1) patients operationalize their experiences to easily contextualize and share executable strategies; (2) operationalization has to be done within the larger context of sharing illness trajectories; and (3) the support groups develop common understanding towards diabetes management. We further discuss how our findings translate into design implications for supporting chronic illness patients in online community settings. PMID:25360442

Mutations in the PFN1 gene are not a common cause in patients with amyotrophic lateral sclerosis and frontotemporal lobar degeneration in France.

PubMed

Lattante, Serena; Le Ber, Isabelle; Camuzat, Agnès; Brice, Alexis; Kabashi, Edor

2013-06-01

Amyotrophic lateral sclerosis (ALS) and frontotemporal lobar degeneration (FTLD) are 2 adult onset neurological disorders with overlapping symptoms and clinical characteristics. It is well established that they share a common pathologic and genetic background. Recently, mutations in profilin 1 gene (PFN1) have been identified in patients with familial ALS, suggesting a role for this gene in the pathogenesis of the disease. Based on this, we hypothesized that mutations in PFN1 might also contribute to FTLD disease. We studied a French cohort of 165 ALS/FTLD patients, without finding any variant. We conclude that mutations in PFN1 are not a common cause for ALS/FTLD in France. Copyright © 2013 Elsevier Inc. All rights reserved.

Medical home capabilities of primary care practices that serve sociodemographically vulnerable neighborhoods.

PubMed

Friedberg, Mark W; Coltin, Kathryn L; Safran, Dana Gelb; Dresser, Marguerite; Schneider, Eric C

2010-06-14

Under current medical home proposals, primary care practices using specific structural capabilities will receive enhanced payments. Some practices disproportionately serve sociodemographically vulnerable neighborhoods. If these practices lack medical home capabilities, their ineligibility for enhanced payments could worsen disparities in care. Via survey, 308 Massachusetts primary care practices reported their use of 13 structural capabilities commonly included in medical home proposals. Using geocoded US Census data, we constructed racial/ethnic minority and economic disadvantage indices to describe the neighborhood served by each practice. We compared the structural capabilities of "disproportionate-share" practices (those in the most sociodemographically vulnerable quintile on each index) and others. Racial/ethnic disproportionate-share practices were more likely than others to have staff assisting patient self-management (69% vs 55%; P = .003), on-site language interpreters (54% vs 26%; P < .001), multilingual clinicians (80% vs 51%; P < .001), and multifunctional electronic health records (48% vs 29%; P = .01). Similarly, economic disproportionate-share practices were more likely than others to have physician awareness of patient experience ratings (73% vs 65%; P = .03), on-site language interpreters (56% vs 25%; P < .001), multilingual clinicians (78% vs 51%; P < .001), and multifunctional electronic health records (40% vs 31%; P = .03). Disproportionate-share practices were larger than others. After adjustment for practice size, only language capabilities continued to have statistically significant relationships with disproportionate-share status. Contrary to expectations, primary care practices serving sociodemographically vulnerable neighborhoods were more likely than other practices to have structural capabilities commonly included in medical home proposals. Payments tied to these capabilities may aid practices serving vulnerable populations.

Whose data set is it anyway? Sharing raw data from randomized trials.

PubMed

Vickers, Andrew J

2006-05-16

Sharing of raw research data is common in many areas of medical research, genomics being perhaps the most well-known example. In the clinical trial community investigators routinely refuse to share raw data from a randomized trial without giving a reason. Data sharing benefits numerous research-related activities: reproducing analyses; testing secondary hypotheses; developing and evaluating novel statistical methods; teaching; aiding design of future trials; meta-analysis; and, possibly, preventing error, fraud and selective reporting. Clinical trialists, however, sometimes appear overly concerned with being scooped and with misrepresentation of their work. Both possibilities can be avoided with simple measures such as inclusion of the original trialists as co-authors on any publication resulting from data sharing. Moreover, if we treat any data set as belonging to the patients who comprise it, rather than the investigators, such concerns fall away. Technological developments, particularly the Internet, have made data sharing generally a trivial logistical problem. Data sharing should come to be seen as an inherent part of conducting a randomized trial, similar to the way in which we consider ethical review and publication of study results. Journals and funding bodies should insist that trialists make raw data available, for example, by publishing data on the Web. If the clinical trial community continues to fail with respect to data sharing, we will only strengthen the public perception that we do clinical trials to benefit ourselves, not our patients.

Social Networks and High Healthcare Utilization: Building Resilience Through Analysis

DTIC Science & Technology

2016-09-01

of Social Network Analysis Patients Developing targeted intervention programs based on the individual’s needs may potentially help improve the...network structure is found in the patterns of interconnection that develop between nodes. It is this linking through common nodes, “the AB link shares...transitivity is responsible for the clustering of nodes that form “communities” of people based on geography, common interests, or other group

Shared decision making in Italy: An updated revision of the current situation.

PubMed

Bottacini, Alessandro; Scalia, Peter; Goss, Claudia

2017-06-01

The aim of this paper is to update the previous review on the state of patient and public participation in healthcare in Italy. Policymakers consider patient involvement an important aspect in health care decisions and encourage patients to actively participate in the clinical interaction. Nevertheless, the term shared decision making (SDM) is still not clearly defined. Patient associations promote patient participation in health care decisions. Several experts attended the latest consensus conference about patient engagement to reach a consensus on the definition of SDM. Research regarding SDM in Italy continues to increase with 17 articles published between 2012 and 2017. Researchers have assessed the variables associated with patient involvement and explored the use of the SDM approach in different medical settings. Despite the dedicated SDM initiative, researchers in Italy recognize room for improvement. Work is needed to reach a common language regarding SDM and its mechanisms to implement this approach at the clinical level. Copyright © 2017. Published by Elsevier GmbH.

A common ground in clinical discussion groups: Intersubjective resonance and implicit operational theories.

PubMed

Bernardi, Ricardo

2017-10-01

Clinical discussion groups based on the Three-Level Model for Observing Patient Transformations (3-LM) enable us to reflect on the clinical common ground shared by psychoanalysts who have different theoretical frameworks. The very existence of this common ground is controversial. While analysts such as Wallerstein support it, others, like Green, think it is just a myth. In their 2005 controversy Wallerstein and Green proposed an observation procedure that might clarify this matter. This procedure bears great similarity to the one used by clinical discussion groups that apply the 3-LM. The study of numerous theoretically heterogeneous groups that use this model shows that communication is possible in crucial areas. We may thus conclude that a partial and dynamic common ground exists. At a phenomenological level, certain fragments of material produce a shared resonance that enriches clinical understanding for the whole group. Communication is also possible with regard to the conceptualization of patient changes, although some controversial issues persist at this level. Finally, at the level of theoretical explanations, divergences concerning abstract theories do not prevent a fertile interaction among 'in vivo' personal implicit theories. The latter give rise to the actual operational frameworks underlying participants' approach to clinical problems. Copyright © 2017 Institute of Psychoanalysis.

Hispanic Cultural Influences on Medical Practice

PubMed Central

Poma, Pedro A.

1983-01-01

Because the proportion of Hispanic patients is increasing rapidly, most physicians are now coming into daily contact with Hispanics. In addition to obvious difficulty with oral communication, Hispanics share characteristics, in varying degrees, that may interfere with their search for medical help, the diagnoses of their illnesses, therapy, and health education. Neither physicians nor other health professionals need to be experts on Hispanic culture or language to be able to assist Hispanic patients properly. This article summarizes the ethnic background, beliefs, and approaches to health commonly noted among Hispanic patients. Their commonly held assumption that they are in this country only temporarily prevents successful acculturation efforts. Non-Hispanic physicians can nonetheless find great satisfaction in providing quality care for their Hispanic patients. PMID:6644836

How Primary Care Providers Talk to Patients about Genome Sequencing Results: Risk, Rationale, and Recommendation.

PubMed

Vassy, Jason L; Davis, J Kelly; Kirby, Christine; Richardson, Ian J; Green, Robert C; McGuire, Amy L; Ubel, Peter A

2018-06-01

Genomics will play an increasingly prominent role in clinical medicine. To describe how primary care physicians (PCPs) discuss and make clinical recommendations about genome sequencing results. Qualitative analysis. PCPs and their generally healthy patients undergoing genome sequencing. Patients received clinical genome reports that included four categories of results: monogenic disease risk variants (if present), carrier status, five pharmacogenetics results, and polygenic risk estimates for eight cardiometabolic traits. Patients' office visits with their PCPs were audio-recorded, and summative content analysis was used to describe how PCPs discussed genomic results. For each genomic result discussed in 48 PCP-patient visits, we identified a "take-home" message (recommendation), categorized as continuing current management, further treatment, further evaluation, behavior change, remembering for future care, or sharing with family members. We analyzed how PCPs came to each recommendation by identifying 1) how they described the risk or importance of the given result and 2) the rationale they gave for translating that risk into a specific recommendation. Quantitative analysis showed that continuing current management was the most commonly coded recommendation across results overall (492/749, 66%) and for each individual result type except monogenic disease risk results. Pharmacogenetics was the most common result type to prompt a recommendation to remember for future care (94/119, 79%); carrier status was the most common type prompting a recommendation to share with family members (45/54, 83%); and polygenic results were the most common type prompting a behavior change recommendation (55/58, 95%). One-fifth of recommendation codes associated with monogenic results were for further evaluation (6/24, 25%). Rationales for these recommendations included patient context, family context, and scientific/clinical limitations of sequencing. PCPs distinguish substantive differences among categories of genome sequencing results and use clinical judgment to justify continuing current management in generally healthy patients with genomic results.

Development of a Framework Based on Reflective MCDA to Support Patient-Clinician Shared Decision-Making: The Case of the Management of Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET) in the United States.

PubMed

Wagner, Monika; Samaha, Dima; Khoury, Hanane; O'Neil, William M; Lavoie, Louis; Bennetts, Liga; Badgley, Danielle; Gabriel, Sylvie; Berthon, Anthony; Dolan, James; Kulke, Matthew H; Goetghebeur, Mireille

2018-01-01

Well- or moderately differentiated gastroenteropancreatic neuroendocrine tumors (GEP-NETs) are often slow-growing, and some patients with unresectable, asymptomatic, non-functioning tumors may face the choice between watchful waiting (WW), or somatostatin analogues (SSA) to delay progression. We developed a comprehensive multi-criteria decision analysis (MCDA) framework to help patients and physicians clarify their values and preferences, consider each decision criterion, and support communication and shared decision-making. The framework was adapted from a generic MCDA framework (EVIDEM) with patient and clinician input. During a workshop, patients and clinicians expressed their individual values and preferences (criteria weights) and, on the basis of two scenarios (treatment vs WW; SSA-1 [lanreotide] vs SSA-2 [octreotide]) with evidence from a literature review, expressed how consideration of each criterion would impact their decision in favor of either option (score), and shared their knowledge and insights verbally and in writing. The framework included benefit-risk criteria and modulating factors, such as disease severity, quality of evidence, costs, and constraints. Overall and progression-free survival being most important, criteria weights ranged widely, highlighting variations in individual values and the need to share them. Scoring and considering each criterion prompted a rich exchange of perspectives and uncovered individual assumptions and interpretations. At the group level, type of benefit, disease severity, effectiveness, and quality of evidence favored treatment; cost aspects favored WW (scenario 1). For scenario 2, most criteria did not favor either option. Patients and clinicians consider many aspects in decision-making. The MCDA framework provided a common interpretive frame to structure this complexity, support individual reflection, and share perspectives. Ipsen Pharma.

A neuropsychological comparison of obsessive-compulsive disorder and trichotillomania.

PubMed

Chamberlain, Samuel R; Fineberg, Naomi A; Blackwell, Andrew D; Clark, Luke; Robbins, Trevor W; Sahakian, Barbara J

2007-03-02

Obsessive-compulsive disorder (OCD) and trichotillomania (compulsive hair-pulling) share overlapping co-morbidity, familial transmission, and phenomenology. However, the extent to which these disorders share a common cognitive phenotype has yet to be elucidated using patients without confounding co-morbidities. To compare neurocognitive functioning in co-morbidity-free patients with OCD and trichotillomania, focusing on domains of learning and memory, executive function, affective processing, reflection-impulsivity and decision-making. Twenty patients with OCD, 20 patients with trichotillomania, and 20 matched controls undertook neuropsychological assessment after meeting stringent inclusion criteria. Groups were matched for age, education, verbal IQ, and gender. The OCD and trichotillomania groups were impaired on spatial working memory. Only OCD patients showed additional impairments on executive planning and visual pattern recognition memory, and missed more responses to sad target words than other groups on an affective go/no-go task. Furthermore, OCD patients failed to modulate their behaviour between conditions on the reflection-impulsivity test, suggestive of cognitive inflexibility. Both clinical groups showed intact decision-making and probabilistic reversal learning. OCD and trichotillomania shared overlapping spatial working memory problems, but neuropsychological dysfunction in OCD spanned additional domains that were intact in trichotillomania. Findings are discussed in relation to likely fronto-striatal neural substrates and future research directions.

Family health care decision making and self-efficacy with patients with ALS at the end of life

PubMed Central

NOLAN, MARIE T.; KUB, JOAN; HUGHES, MARK T.; TERRY, PETER B.; ASTROW, ALAN B.; CARBO, CYNTHIA A.; THOMPSON, RICHARD E.; CLAWSON, LORA; TEXEIRA, KENNETH; SULMASY, DANIEL P.

2008-01-01

Objective: Persons with ALS differ from those with other terminal illnesses in that they commonly retain capacity for decision making close to death. The role patients would opt to have their families play in decision making at the end of life may therefore be unique. This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death. Methods: A descriptive correlational design with 16 patient–family member dyads was used. Quantitative findings were enriched with in-depth interviews of a subset of five family members following the patient's death. Results: Eighty-seven percent of patients had issued an advance directive. Patients who would opt to make health care decisions independently (i.e., according to the patient's preferences alone) were most likely to have their families report that decisions were made in the style that the patient preferred. Those who preferred shared decision making with family or decision making that relied upon the family were more likely to have their families report that decisions were made in a style that was more independent than preferred. When interviewed in depth, some family members described shared decision making although they had reported on the survey that the patient made independent decisions. Significance of results: The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families. PMID:18662421

Influence of English proficiency on patient-provider communication and shared decision-making.

PubMed

Paredes, Anghela Z; Idrees, Jay J; Beal, Eliza W; Chen, Qinyu; Cerier, Emily; Okunrintemi, Victor; Olsen, Griffin; Sun, Steven; Cloyd, Jordan M; Pawlik, Timothy M

2018-06-01

The number of patients in the United States (US) who speak a language other than English is increasing. We evaluated the impact of English proficiency on self-reported patient-provider communication and shared decision-making. The 2013-2014 Medical Expenditure Panel Survey database was utilized to identify respondents who spoke a language other than English. Patient-provider communication (PPC) and shared decision-making (SDM) scores from 4-12 were categorized as "poor" (4-7), "average" (8-11), and "optimal." The relationship between PPC, SDM, and English proficiency was analyzed. Among 13,880 respondents, most were white (n = 10,281, 75%), age 18-39 (n = 6,677, 48%), male (n = 7,275, 52%), middle income (n = 4,125, 30%), and born outside of the US (n = 9,125, 65%). English proficiency was rated as "very well" (n = 7,221, 52%), "well" (n = 2,378, 17%), "not well" (n = 2,820, 20%), or "not at all" (n = 1,463, 10%). On multivariable analysis, patients who rated their English as "well" (OR 1.73, 95% CI 1.37-2.18) or "not well" (OR 1.53, 95% CI 1.10-2.14) were more likely to report "poor" PPC (both P < .01). Similarly, SDM was more commonly self-reported as "poor" among patients who reported English proficiency as "not well" (OR 1.31, 95% CI 1.04-1.65, P = .02). Decreased English proficiency was associated with worse self-reported patient-provider communication and shared decision-making. Attention to patients' language needs is critical to patient satisfaction and improved perception of care. Copyright © 2018 Elsevier Inc. All rights reserved.

Spousal correlations for lifestyle factors and selected diseases in Chinese couples.

PubMed

Jurj, Adriana L; Wen, Wanqing; Li, Hong-Lan; Zheng, Wei; Yang, Gong; Xiang, Yong-Bing; Gao, Yu-Tang; Shu, Xiao-Ou

2006-04-01

Spouses usually are genetically unrelated and share a common living environment. Thus, concordance of diseases in spouses reflects mainly environmental etiologic contributors. The purpose of this study is to investigate spousal associations for selected lifestyle characteristics and common medical conditions. Baseline information from 66,130 married couples participating in the Shanghai Women's Health Study was used in this analysis. Husband-wife associations were evaluated by means of logistic regression, using women's lifestyle and medical conditions as dependent variables. Adjustments were made for women's age, education, occupation, and family income in all models. Women were more than twice as likely to be current or former smokers; be regular consumers of alcohol, tea, and ginseng; and exercise regularly if their husbands had the same habit. A statistically significant husband-wife disease association was found for tuberculosis, chronic bronchitis, asthma, chronic gastritis, chronic hepatitis, ulcerative colitis, cholelithiasis, high blood pressure, coronary heart disease, and stroke. Spouses share common lifestyle habits and health risks. This study supports the hypothesis that the shared marital environment may contribute to similarities in lifestyle and morbidity in spouses and provides a basis for health promotion and prevention strategies that target the spouses of patients.

[Job-sharing in postgraduate medical training: not automatically a nice duet].

PubMed

Levi, M

2004-02-14

Part-time work is an increasingly common phenomenon amongst medical professionals. Therefore many postgraduate training programmes for resident physicians also offer the opportunity of part-time work, which is usually in the form of an 80% full-time equivalent post. A new initiative has created the possibility of job-sharing, in which each of the participants fulfills 50% of one training position. Although the experience of the participants is mainly positive, it is unclear how this development will impact the quality of patient care and how it will affect the fulfillment of the training objectives. A more systematic evaluation of job-sharing in postgraduate medical training programmes is required to clarify these points.

Choosing to Decline: Finding Common Ground through the Perspective of Shared Decision Making.

PubMed

Megregian, Michele; Nieuwenhuijze, Marianne

2018-05-18

Respectful communication is a key component of any clinical relationship. Shared decision making is the process of collaboration that occurs between a health care provider and patient in order to make health care decisions based upon the best available evidence and the individual's preferences. A midwife and woman (and her support persons) engage together to make health care decisions, using respectful communication that is based upon the best available evidence and the woman's preferences, values, and goals. Supporting a woman's autonomy, however, can be particularly challenging in maternity care when recommended treatments or interventions are declined. In the past, the real or perceived increased risk to a woman's health or that of her fetus as a result of that choice has occasionally resulted in coercion. Through the process of shared decision making, the woman's autonomy may be supported, including the choice to decline interventions. The case presented here demonstrates how a shared decision-making framework can support the health care provider-patient relationship in the context of informed refusal. © 2018 by the American College of Nurse-Midwives.

77 FR 38344 - Medallion Financial Corp.; Notice of Application

Federal Register 2010, 2011, 2012, 2013, 2014

2012-06-27

... increasing the maximum number of shares of Applicant's common stock (``Common Stock'') available for issuance... Amended Director Plan. Under the Amended Director Plan, a maximum of 200,000 shares of Applicant's Common... shares of Applicant's Common Stock that may be issued to any one Eligible Director. The Amended Director...

Improving self-management of type 1 and type 2 diabetes.

PubMed

Phillips, Anne

2016-01-06

Diabetes is an increasingly common life-long condition, which has significant physical, psychological and behavioural implications for individuals. Self-management of type 1 and type 2 diabetes can be complex and challenging. A collaborative approach to care, between healthcare professionals and patients, is essential to promote self-management skills and knowledge to help patients engage in shared decision making and manage any difficulties associated with a diagnosis of diabetes.

Dissemination of CPR video self-instruction materials to secondary trainees: results from a hospital-based CPR education trial

PubMed Central

Ikeda, Daniel J.; Buckler, David G.; Li, Jiaqi; Agarwal, Amit K.; Di Taranti, Laura J.; Kurtz, James; dos Reis, Ryan; Leary, Marion; Abella, Benjamin S.; Blewer, Audrey L.

2016-01-01

Background Cardiopulmonary resuscitation (CPR) video self-instruction (VSI) materials have been promoted as a scalable approach to increase the prevalence of CPR skills among the lay public, in part due to the opportunity for secondary training (i.e., sharing of training materials). However, the motivations for, and barriers to, disseminating VSI materials to secondary trainees is poorly understood. Methods This work represents an ancillary investigation of a prospective hospital-based CPR education trial in which family members of cardiac patients were trained using VSI. Mixed-methods surveys were administered to primary trainees six months after initial enrollment. Surveys were designed to capture motivations for, and barriers to, sharing VSI materials, the number of secondary trainees with whom materials were shared, and the settings, timing, and recipients of trainings. Results Between 07/2012–05/2015, 653 study participants completed a six-month follow-up interview. Of those, 345 reported sharing VSI materials with 1455 secondary trainees. Materials were shared most commonly with family members. In a logistic regression analysis, participants in the oldest quartile (age > 63 years) were less likely to share materials compared to those in the youngest quartile (age ≤ 44 years, OR 0.58, CI 0.37–0.90, p=0.02). Among the 308 participants who did not share their materials, time constraints was the most commonly cited barrier for not sharing. Conclusions VSI materials represent a strategy for secondary dissemination of CPR training, yet older individuals have a lower likelihood of sharing relative to younger individuals. Further work is warranted to remedy perceived barriers to CPR dissemination among the lay public using VSI approaches. PMID:26776900

Epidemiology of fibromyalgia.

PubMed

Neumann, Lily; Buskila, Dan

2003-10-01

Chronic widespread pain, the cardinal symptom of fibromyalgia (FM), is common in the general population, with comparable prevalence rates of 7.3% to 12.9% across different countries. The prevalence of FM in the general population was reported to range from 0.5% to 5% and up to 15.7% in the clinic. The common association of FM with other rheumatic disorders, chronic viral infections, and systemic illnesses has been well documented in several studies. Up to 65% of patients with systemic lupus erythematosus meet the criteria for FM. FM is considered a member of the family of functional somatic syndromes. These syndromes are very common and share a similar phenomenology, epidemiologic characteristics, high rates of occurrence, a common pathogenesis, and similar management strategies. A high prevalence of FM was demonstrated among relatives of patients with FM and it may be attributed to genetic and environmental factors.

Using business analytics to improve outcomes.

PubMed

Rivera, Jose; Delaney, Stephen

2015-02-01

Orlando Health has brought its hospital and physician practice revenue cycle systems into better balance using four sets of customized analytics: Physician performance analytics gauge the total net revenue for every employed physician. Patient-pay analytics provide financial risk scores for all patients on both the hospital and physician practice sides. Revenue management analytics bridge the gap between the back-end central business office and front-end physician practice managers and administrators. Enterprise management analytics allow the hospitals and physician practices to share important information about common patients.

Effective Partnering in Conducting Benefit-Risk Patient Preference Studies: Perspectives From a Patient Advocacy Organization, a Pharmaceutical Company, and Academic Stated-Preference Researchers.

PubMed

Wolka, Anne M; Fairchild, Angelyn O; Reed, Shelby D; Anglin, Greg; Johnson, F Reed; Siegel, Michael; Noel, Rebecca

2017-01-01

Formal incorporation of patients' perspectives is becoming increasingly important in medical product development and decision making. This article shares practical advice regarding how patient advocacy organizations, the pharmaceutical industry, and academic experts in stated-preference research can effectively partner on benefit-risk patient preference studies. The authors partnered on a benefit-risk patient preference study related to the treatment of psoriasis. The authors from Duke Clinical Research Institute also share their experiences in collaborating with numerous other organizations in conducting benefit-risk patient preference studies. Upon initiation of the study partnership with appropriate experts, training is important to ensure all collaborators have a common understanding of the methodology, what objectives stated-preference methods can support, and expectations for the project. To the extent possible, partners should align on and document relevant clinical and logistical details prior to study implementation. During study implementation, partners should use good communication practices and document and maintain a record of any changes to the original plan. Presentation of the study results should be tailored to the particular audience, with the appropriate partner leading the presentation based on its format and audience. Partners from patient advocacy organizations, the pharmaceutical industry, and academia can effectively collaborate on benefit-risk patient preference studies with sufficient planning and ongoing communication. This article is a call for action for other organizations to engage in sharing of experiences regarding effective partnering in quantifying patient preferences in medical product development.

Revitalization of the Shared Commons: Education for Sustainability and Marginalized Cultures

ERIC Educational Resources Information Center

Glasson, George E.

2010-01-01

Education for sustainability provides a vision for revitalizing the environmental commons while preserving cultural traditions and human rights. What happens if the environmental commons is shared by two politically disparate and conflicting cultures? As in many shared common lands, what happens if one culture is dominant and represents a more…

Availability and Use of Shared Data From Cardiometabolic Clinical Trials.

PubMed

Vaduganathan, Muthiah; Nagarur, Amulya; Qamar, Arman; Patel, Ravi B; Navar, Ann Marie; Peterson, Eric D; Bhatt, Deepak L; Fonarow, Gregg C; Yancy, Clyde W; Butler, Javed

2018-02-27

Sharing of patient-level clinical trial data has been widely endorsed. Little is known about how extensively these data have been used for cardiometabolic diseases. We sought to evaluate the availability and use of shared data from cardiometabolic clinical trials. We extracted data from ClinicalStudyDataRequest.com, a large, multisponsor data-sharing platform hosting individual patient-level data from completed studies sponsored by 13 pharmaceutical companies. From January 2013 to May 2017, the platform had data from 3374 clinical trials, of which 537 (16%) evaluated cardiometabolic therapeutics (phase 1, 36%; phase 2, 17%; phase 2/3, 1%; phase 3, 42%; phase 4, 4%). They covered 74 therapies and 398 925 patients. Diabetes mellitus (60%) and hypertension (15%) were the most common study topics. Median time from study completion to data availability was 79 months. As of May 2017, ClinicalStudyDataRequest.com had received 318 submitted proposals, of which 163 had signed data-sharing agreements. Thirty of these proposals were related to cardiometabolic therapies and requested data from 79 unique studies (15% of all trials, 29% of phase 3/4 trials). Most (96%) data requesters of cardiometabolic clinical trial data were from academic centers in North America and Western Europe, and half the proposals were unfunded. Most proposals were for secondary hypothesis-generating questions, with only 1 proposed reanalysis of the original study primary hypothesis. To date, 3 peer-reviewed articles have been published after a median of 19 months (9-32 months) from the data-sharing agreement. Despite availability of data from >500 cardiometabolic trials in a multisponsor data-sharing platform, only 15% of these trials and 29% of phase 3/4 trials have been accessed by investigators thus far, and a negligible minority of analyses have reached publication. © 2017 American Heart Association, Inc.

Electronic transfer of sensitive patient data.

PubMed

Detterbeck, A M W; Kaiser, J; Hirschfelder, U

2015-01-01

The purpose of this study was to develop decision-making aids and recommendations for dental practitioners regarding the utilization and sharing of sensitive digital patient data. In the current environment of growing digitization, healthcare professionals need detailed knowledge of secure data management to maximize confidentiality and minimize the risks involved in both archiving patient data and sharing it through electronic channels. Despite well-defined legal requirements, an all-inclusive technological solution does not currently exist. The need for a preliminary review and critical appraisal of common practices of data transfer prompted a search of the literature and the Web to identify viable methods of secure data exchange and to develop a flowchart. A strong focus was placed on the transmission of datasets both smaller than and larger than 10 MB, and on secure communication by smartphone. Although encryption of patient-related data should be routine, it is often difficult to implement. Pretty Good Privacy (PGP) and Secure/Multipurpose Internet Mail Extensions (S/MIME) are viable standards for secure e-mail encryption. Sharing of high-volume data should be accomplished with the help of file encryption. Careful handling of sensitive patient data is mandatory, and it is the end-user's responsibility to meet any requirements for encryption, preferably by using free, open-source (and hence transparent) software.

Psoriasis and Comorbid Diseases Part I. Epidemiology

PubMed Central

Takeshita, Junko; Grewal, Sungat; Langan, Sinéad M.; Mehta, Nehal N.; Ogdie, Alexis; Van Voorhees, Abby S.; Gelfand, Joel M.

2017-01-01

Psoriasis is a common chronic inflammatory disease of the skin that is increasingly being recognized as a systemic inflammatory disorder. Psoriatic arthritis is a well-known comorbidity of psoriasis. A rapidly expanding body of literature in various populations and settings supports additional associations between psoriasis and cardiometabolic disease, gastrointestinal disease, kidney disease, malignancies, infections, and mood disorders. The pathogenesis of comorbid disease in psoriasis patients remains unknown; however, shared inflammatory pathways, cellular mediators, genetic susceptibility, and common risk factors are hypothesized to be contributing elements. As additional psoriasis comorbidities continue to emerge, education of healthcare providers is essential to ensuring comprehensive medical care for patients with psoriasis. PMID:28212759

Frequencies of Private Mentions and Sharing of Mammography and Breast Cancer Terms on Facebook: A Pilot Study.

PubMed

Huesch, Marco; Chetlen, Alison; Segel, Joel; Schetter, Susann

2017-06-09

The most popular social networking site in the United States is Facebook, an online forum where circles of friends create, share, and interact with each other's content in a nonpublic way. Our objectives were to understand (1) the most commonly used terms and phrases relating to breast cancer screening, (2) the most commonly shared website links that other women interacted with, and (3) the most commonly shared website links, by age groups. We used a novel proprietary tool from Facebook to analyze all of the more than 1.7 million unique interactions (comments on stories, reshares, and emoji reactions) and stories associated with breast cancer screening keywords that were generated by more than 1.1 million unique female Facebook users over the 1 month between November 15 and December 15, 2016. We report frequency distributions of the most popular shared Web content by age group and keywords. On average, each of 59,000 unique stories during the month was reshared 1.5 times, commented on nearly 8 times, and reacted to more than 20 times by other users. Posted stories were most often authored by women aged 45-54 years. Users shared, reshared, commented on, and reacted to website links predominantly to e-commerce sites (12,200/1.7 million, 36% of all the most popular links), celebrity news (n=8800, 26%), and major advocacy organizations (n=4900, 15%; almost all accounted for by the American Cancer Society breast cancer site). On Facebook, women shared and reacted to links to commercial and informative websites regarding breast cancer and screening. This information could inform patient outreach regarding breast cancer screening, indirectly through better understanding of key issues, and directly through understanding avenues for paid messaging to women authoring and reacting to content in this space. ©Marco Huesch, Alison Chetlen, Joel Segel, Susann Schetter. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 09.06.2017.

Frequencies of Private Mentions and Sharing of Mammography and Breast Cancer Terms on Facebook: A Pilot Study

PubMed Central

Chetlen, Alison; Segel, Joel; Schetter, Susann

2017-01-01

Background The most popular social networking site in the United States is Facebook, an online forum where circles of friends create, share, and interact with each other’s content in a nonpublic way. Objective Our objectives were to understand (1) the most commonly used terms and phrases relating to breast cancer screening, (2) the most commonly shared website links that other women interacted with, and (3) the most commonly shared website links, by age groups. Methods We used a novel proprietary tool from Facebook to analyze all of the more than 1.7 million unique interactions (comments on stories, reshares, and emoji reactions) and stories associated with breast cancer screening keywords that were generated by more than 1.1 million unique female Facebook users over the 1 month between November 15 and December 15, 2016. We report frequency distributions of the most popular shared Web content by age group and keywords. Results On average, each of 59,000 unique stories during the month was reshared 1.5 times, commented on nearly 8 times, and reacted to more than 20 times by other users. Posted stories were most often authored by women aged 45-54 years. Users shared, reshared, commented on, and reacted to website links predominantly to e-commerce sites (12,200/1.7 million, 36% of all the most popular links), celebrity news (n=8800, 26%), and major advocacy organizations (n=4900, 15%; almost all accounted for by the American Cancer Society breast cancer site). Conclusions On Facebook, women shared and reacted to links to commercial and informative websites regarding breast cancer and screening. This information could inform patient outreach regarding breast cancer screening, indirectly through better understanding of key issues, and directly through understanding avenues for paid messaging to women authoring and reacting to content in this space. PMID:28600279

Patient registries: useful tools for clinical research in myasthenia gravis.

PubMed

Baggi, Fulvio; Mantegazza, Renato; Antozzi, Carlo; Sanders, Donald

2012-12-01

Clinical registries may facilitate research on myasthenia gravis (MG) in several ways: as a source of demographic, clinical, biological, and immunological data on large numbers of patients with this rare disease; as a source of referrals for clinical trials; and by allowing rapid identification of MG patients with specific features. Physician-derived registries have the added advantage of incorporating diagnostic and treatment data that may allow comparison of outcomes from different therapeutic approaches, which can be supplemented with patient self-reported data. We report the demographic analysis of MG patients in two large physician-derived registries, the Duke MG Patient Registry, at the Duke University Medical Center, and the INNCB MG Registry, at the Istituto Neurologico Carlo Besta, as a preliminary study to assess the consistency of the two data sets. These registries share a common structure, with an inner core of common data elements (CDE) that facilitate data analysis. The CDEs are concordant with the MG-specific CDEs developed under the National Institute of Neurological Disorders and Stroke Common Data Elements Project. © 2012 New York Academy of Sciences.

Web resources for rare auto-inflammatory diseases: towards a common patient registry.

PubMed

Touitou, Isabelle; Hentgen, Véronique; Koné-Paut, Isabelle

2009-06-01

To review information resources on rare auto-inflammatory disorders (AIDs) for use by health care professionals, focusing particularly on patient registries. Using relevant key words, we surveyed the websites of several scientific societies of immunology, paediatrics and rheumatology, as well as Pubmed and specialized databases for AIDs. The Internet provides a wide variety of information related to AIDs. Moreover, several other initiatives have been undertaken to create new resources for professionals. We reviewed six patient registries for rare AIDs, taking a special interest in the submission questionnaire. We revealed a wide overlap between the items used in the questionnaires, whereas the currently available registries appeared inappropriate for AIDs patients with complex or undefined diagnosis. AIDs share common clinical features, pathophysiological pathways and therapeutic approaches. Although several resources are now available for rare AIDs, a unique and dedicated site gathering all aspects of these diseases as a whole is still lacking, i.e. covering research as well as the needs of AIDs patients and health care professionals. Our study thus advocates a merging of existing patient registries or the creation of a common database.

Prescription Patterns and the Cost of Migraine Treatments in German General and Neurological Practices.

PubMed

Jacob, Louis; Kostev, Karel

2017-07-01

The aim of this study was to analyze prescription patterns and the cost of migraine treatments in general practices (GPs) and neurological practices (NPs) in Germany. This study included 43,149 patients treated in GPs and 13,674 patients treated in NPs who were diagnosed with migraine in 2015. Ten different families of migraine therapy were included in the analysis: triptans, analgesics, anti-emetics, beta-blockers, antivertigo products, gastroprokinetics, anti-epileptics, calcium channel blockers, tricyclic antidepressants, and other medications (all other classes used in the treatment of migraine including homeopathic medications). The share of migraine therapies and their costs were estimated for GPs and NPs. The mean age was 44.4 years in GPs and 44.1 years in NPs. Triptans and analgesics were the 2 most commonly prescribed families of drugs in all patients and in the 9 specific subgroups. Interestingly, triptans were more commonly prescribed in NPs than in GPs (30.9% to 55.0% vs. 30.0% to 44.7%), whereas analgesics were less frequently given in NPs than in GPs (11.5% to 17.2% vs. 35.3% to 42.4%). Finally, the share of patients who received no therapy was higher in NPs than in GPs (33.9% to 58.4% vs. 27.5% to 37.9%). The annual cost per patient was €66.04 in GPs and €94.71 in NPs. Finally, the annual cost per patient increased with age and was higher in women and in individuals with private health insurance coverage than in men and individuals with public health insurance coverage. Triptans and analgesics were the 2 most commonly prescribed drugs for the treatment of migraine. Furthermore, approximately 30% to 40% of patients did not receive any therapy. Finally, the annual cost per patient was higher in NPs than in GPs. © 2016 World Institute of Pain.

Evolution of IgA nephropathy into anaphylactoid purpura in six cases--further evidence that IgA nephropathy and Henoch-Schonlein purpura nephritis share common pathogenesis.

PubMed

Kamei, Koichi; Ogura, Masao; Sato, Mai; Ito, Shuichi; Ishikura, Kenji

2016-05-01

As the morphological and immunohistochemical manifestations of immunoglobulin A (IgA) nephropathy and Henoch-Schonlein purpura nephritis (HSPN) are very similar, they are considered to share a common pathogenesis. Although HSPN usually develops after the appearance of anaphylactoid purpura, we have encountered patients whose renal symptoms preceded purpura. We reviewed the clinical courses of patients who were first diagnosed with IgA nephropathy, but developed purpura later, at the National Center for Child Health and Development in Tokyo, Japan. Of the 53 patients who were diagnosed with primary IgA nephropathy at our institute during the study period (March 2002 to July 2015), six (11 %) developed anaphylactoid purpura after the diagnosis of primary IgA nephropathy and therefore met the inclusion criteria. Duration between the onset of nephritis and subsequent appearance of purpura ranged from 5 months to 14 years. One patient reached end-stage renal failure due to IgA nephropathy and developed purpura after renal transplantation. All renal biopsies performed before the appearance of purpura showed mesangial proliferation with predominant IgA deposits. Urinary findings deteriorated in three patients after the appearance of purpura, including one patient who developed rapidly progressive glomerulonephritis. Renal biopsy findings worsened in two patients. At the last observation, two patients showed mild renal insufficiency. Our clinical experience and previous reports support the argument that IgA nephropathy and HSPN are different manifestations of a single disease. Hence, it is acceptable to consider that they are variants of a single disease.

Forging partnerships between optometrists and ergonomists to improve visual comfort and productivity in the workplace.

PubMed

Long, Jennifer

2014-01-01

Ergonomists and optometrists often have mutual clients/patients with complex visual needs in the workplace but communication between the professionals is usually indirect through the client/patient. This paper describes a joint professional development meeting between optometrists and ergonomists in Canberra, Australia, which included a discussion to explore how to improve communication between the two professions. Optometrists and ergonomists reported they would prefer more information before conducting assessments and providing advice. Vision screening forms commonly in use for computer workers were viewed as inadequate to meet these needs. Communication between the two professions was hampered by absence of contact details of the optometrist/ergonomist, perceptions that the other profession is too busy to talk, privacy considerations in sharing information and funding issues for shared care arrangements. There are opportunities for increasing awareness of good vision in workplaces. Communication between optometrists and ergonomists can be improved by developing information-sharing documents relevant to modern workplaces.

Benefits of Teaching Medical Students How to Communicate with Patients Having Serious Illness

PubMed Central

Ellman, Matthew S.; Fortin, Auguste H.

2012-01-01

Innovative approaches are needed to teach medical students effective and compassionate communication with seriously ill patients. We describe two such educational experiences in the Yale Medical School curriculum for third-year medical students: 1) Communicating Difficult News Workshop and 2) Ward-Based End-of-Life Care Assignment. These two programs address educational needs to teach important clinical communication and assessment skills to medical students that previously were not consistently or explicitly addressed in the curriculum. The two learning programs share a number of educational approaches driven by the learning objectives, the students’ development, and clinical realities. Common educational features include: experiential learning, the Biopsychosocial Model, patient-centered communication, integration into clinical clerkships, structured skill-based learning, self-reflection, and self-care. These shared features ― as well as some differences ― are explored in this paper in order to illustrate key issues in designing and implementing medical student education in these areas. PMID:22737055

Exploring difference and overlap between schizophrenia, schizoaffective and bipolar disorders using resting-state brain functional networks.

PubMed

Du, Yuhui; Liu, Jingyu; Sui, Jing; He, Hao; Pearlson, Godfrey D; Calhoun, Vince D

2014-01-01

Schizophrenia, schizoaffective and bipolar disorders share some common symptoms. However, the biomarkers underlying those disorders remain unclear. In fact, there is still controversy about the schizoaffective disorder with respect to its validity of independent category and its relationship with schizophrenia and bipolar disorders. In this paper, based on brain functional networks extracted from resting-state fMRI using a recently proposed group information guided ICA (GIG-ICA) method, we explore the biomarkers for discriminating healthy controls, schizophrenia patients, bipolar patients, and patients with two symptom defined subsets of schizoaffective disorder, and then investigate the relationship between different groups. The results demonstrate that the discriminating regions mainly including frontal, parietal, precuneus, cingulate, supplementary motor, cerebellar, insular and supramarginal cortices perform well in distinguishing the different diagnostic groups. The results also suggest that schizoaffective disorder may be an independent disorder, although its subtype characterized by depressive episodes shares more similarity with schizophrenia.

Dissociations and Interactions between Time, Numerosity and Space Processing

ERIC Educational Resources Information Center

Cappelletti, Marinella; Freeman, Elliot D.; Cipolotti, Lisa

2009-01-01

This study investigated time, numerosity and space processing in a patient (CB) with a right hemisphere lesion. We tested whether these magnitude dimensions share a common magnitude system or whether they are processed by dimension-specific magnitude systems. Five experimental tasks were used: Tasks 1-3 assessed time and numerosity independently…

A New Syndrome with Hypotonia, Obesity, Mental Deficiency, and Facial, Oral, Ocular, and Limb Anomalies

ERIC Educational Resources Information Center

Cohen, M. Michael, Jr.; And Others

1973-01-01

Presented were three case reports of patients, 8 to 18 years of age, who shared common features, such as obesity beginning in midchildhood, hypotonia, mental deficiency characteristic craniofacial appearance (antimongoloid slant, open mouth, or prominent central incisors), oral and ocular anomalies, and tapering extremities with narrow hands and…

Patients' perceptions of their roles in goal setting in a spinal cord injury regional rehabilitation program.

PubMed

Draaistra, Harriett; Singh, Mina D; Ireland, Sandra; Harper, Theresa

2012-01-01

Goal setting is a common practice in rehabilitation, yet there is a paucity of literature exploring patients' perceptions of their roles in this process. This study was conducted using a qualitative descriptive methodology to explore patients' perceptions of their roles in setting goals in a spinal cord injury regional rehabilitation program. Imogene King's theory of goal attainment was used to frame the study. Data were collected through interviews and analyzed using a content analysis. The results revealed four themes: Visioning, Redefining, Brainstorming, and Rebuilding Participants (n = 13) envisioned their roles as setting an overarching priority goal, defining detailed rehabilitation goals, sharing knowledge with the team, and rebuilding skills to attain goals. Implications for nursing practice include the need to understand patients' experiences and perceptions, share knowledge, and support effective communication to promote collaborative goal setting. A need to enhance health professionals' education to fully understand factors influencing patients' abilities to set rehabilitation goals, and future research in methods to promote patients' engagement in goal setting was also clearly indicated.

Screen Shots: When Patients and Families Publish Negative Health Care Narratives Online.

PubMed

Eijkholt, Marleen; Jankowski, Jane; Fisher, Marilyn

2017-01-01

Social media sites and their relationship to health care is a subject of intense debate. Common discussions regarding social media address patient privacy, or e-professionalism. This case study explores the tensions that arise for health care providers when negative patient statements surface in social media and blog forums. Recognizing that patients and families often find relief in sharing personal illness narratives, we contemplate if, and how, individual health care professionals and institutions should address complaints aired in public, unmoderated media. Our discussion begins by presenting a case of a family blogging on the Internet to share grievances (to deidentify the case, we have changed some details). Next, we offer an exploration of the impact on health care delivery when professionals become aware of specific criticisms published online. Strategies for managing electronic criticisms are then proposed. We conclude by proposing a novel E-THICS approach to address negative patient expressions via electronic word of mouth (eWOM). Our examination of this evolving issue focuses on maintaining satisfactory relationships between health care providers and patients/families when dealing with health care narratives published in open online media.

Patient consent to publication and data sharing in industry and NIH-funded clinical trials.

PubMed

Spence, O'Mareen; Onwuchekwa Uba, Richie; Shin, Seongbin; Doshi, Peter

2018-05-03

Participants are recruited into clinical trials under the assumption that the research will contribute to medical knowledge. Therefore, non-publication trials-and, more recently, lack of data sharing-are widely considered to violate the trust of trial participants. Existing practices regarding patient consent to publication and data sharing have not been evaluated. Analyzing informed consent forms (ICFs), we studied what trial participants were told regarding investigators' intention to contribute to medical knowledge, publish trial results, and share de-identified trial data. We obtained 98 ICFs of industry-funded pre-marketing trials for all (17) antibiotics approved by the European Medicines Agency and 46 ICFs of publicly funded trials from the National Heart, Lung and Blood Institute Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) data repository. Three authors independently reviewed ICFs to identify and extract what was stated or implied regarding: (1) publication of results; (2) sharing de-identified data; (3) data ownership; (4) confidentiality of identifiable data; and (5) whether the trial will produce knowledge that offers public benefit. Consensus was obtained from the two reviewers with the greatest overall agreement on all five measures. Disagreements were resolved through discussion among all authors. Four (3%) trials indicated a commitment to publish trial results; 140 (97%) did not commit to publishing trial results; six (4%) indicated a commitment to share de-identified data with third party researchers. Commitments to share were more common in publicly funded trials than industry-funded trials (7% vs 3%). A total of 103 (72%) ICFs indicated the trials will or may produce knowledge that offers public benefits, while 131 (91%) ICFs left unstated who "owned" trial data; of those with statements, the sponsor always claimed ownership. Patient confidentiality was guaranteed in 137 (95%) trials. Our results suggest that consent forms rarely disclose investigators' intentions regarding the sharing of de-identified data or publication of trial results.

Privacy policies for health social networking sites.

PubMed

Li, Jingquan

2013-01-01

Health social networking sites (HSNS), virtual communities where users connect with each other around common problems and share relevant health data, have been increasingly adopted by medical professionals and patients. The growing use of HSNS like Sermo and PatientsLikeMe has prompted public concerns about the risks that such online data-sharing platforms pose to the privacy and security of personal health data. This paper articulates a set of privacy risks introduced by social networking in health care and presents a practical example that demonstrates how the risks might be intrinsic to some HSNS. The aim of this study is to identify and sketch the policy implications of using HSNS and how policy makers and stakeholders should elaborate upon them to protect the privacy of online health data.

Privacy policies for health social networking sites

PubMed Central

Li, Jingquan

2013-01-01

Health social networking sites (HSNS), virtual communities where users connect with each other around common problems and share relevant health data, have been increasingly adopted by medical professionals and patients. The growing use of HSNS like Sermo and PatientsLikeMe has prompted public concerns about the risks that such online data-sharing platforms pose to the privacy and security of personal health data. This paper articulates a set of privacy risks introduced by social networking in health care and presents a practical example that demonstrates how the risks might be intrinsic to some HSNS. The aim of this study is to identify and sketch the policy implications of using HSNS and how policy makers and stakeholders should elaborate upon them to protect the privacy of online health data. PMID:23599228

SHARED, NOT UNIQUE, COMPONENTS OF PERSONALITY AND PSYCHOSOCIAL FUNCTIONING PREDICT DEPRESSION SEVERITY AFTER ACUTE-PHASE COGNITIVE THERAPY

PubMed Central

Clark, Lee Anna; Vittengl, Jeffrey R.; Kraft, Dolores; Jarrett, Robin B.

2005-01-01

In a sample of 100 patients with recurrent major depression, we collected depression severity data early and late in acute-phase cognitive therapy, plus a wide range of psychosocial variables that have been studied extensively in depression research, including measures of interpersonal, cognitive, and social functioning, and personality traits using an inventory that is linked with the Big-Three tradition in personality assessment theory. By assessing this broad range of variables in a single study, we could examine the extent to which relations of these variables with depression were due to (a) a common factor shared across this diverse set of constructs, (b) factors shared among each type of construct (personality vs. psychosocial measures), or (c) specific aspects of the individual measures. Only the most general factor shared across the personality and psychosocial variables predicted later depression. PMID:14632375

What are the decision-making preferences of patients in vascular surgery? A mixed-methods study.

PubMed

Santema, T B Katrien; Stoffer, E Anniek; Kunneman, Marleen; Koelemay, Mark J W; Ubbink, Dirk T

2017-02-10

Shared decision-making (SDM) has been advocated as the preferred method of choosing a suitable treatment option. However, patient involvement in treatment decision-making is not yet common practice in the field of vascular surgery. The aim of this mixed-methods study was to explore patients' decision-making preferences and to investigate which facilitators and barriers patients perceive as important for the application of SDM in vascular surgery. Patients were invited to participate after visiting the vascular surgical outpatient clinic of an Academic Medical Center in the Netherlands. A treatment decision was made during the consultation for an abdominal aortic aneurysm or peripheral arterial occlusive disease. Patients filled in a number of questionnaires (quantitative part) and a random subgroup of patients participated in an in-depth interview (qualitative part). A total of 67 patients participated in this study. 58 per cent of them (n=39) indicated that they preferred a shared role in decision-making. In more than half of the patients (55%; n=37) their preferred role was in disagreement with what they had experienced. 31 per cent of the patients (n=21) preferred a more active role in the decision-making process than they had experienced. Patients indicated a good patient-doctor relationship as an important facilitator for the application of SDM. The vast majority of vascular surgical patients preferred, but did not experience a shared role in the decision-making process, although the concept of SDM was insufficiently clear to some patients. This emphasises the importance of explaining the concept of SDM and implementing it in the clinical encounter. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Negotiating treatment preferences: Physicians' formulations of patients' stance.

PubMed

Landmark, Anne Marie Dalby; Svennevig, Jan; Gulbrandsen, Pål

2016-01-01

Eliciting patients' values and treatment preferences is an essential element in models of shared decision making, yet few studies have investigated the interactional realizations of how physicians do this in authentic encounters. Drawing on video-recorded encounters from Norwegian secondary care, the present study uses the fine-grained empirical methodology of conversation analysis (CA) to identify one conversational practice physicians use, namely, formulations of patients' stance, in which physicians summarize or paraphrase their understanding of the patient's stance towards treatment. The purpose of this study is twofold: (1) to explore what objectives formulations of patients' stance achieve while negotiating treatment and (2) to discuss these objectives in relation to core requirements in shared decision making. Our analysis demonstrates that formulating the patient's stance is a practice physicians use in order to elicit, check, and establish patients' attitudes towards treatment. This practice is in line with general recommendations for making shared decisions, such as exploring and checking patients' preferences and values. However, the formulations may function as a device for doing more than merely checking and establishing common ground and bringing up patients' preferences and views: Accompanied by subtle deprecating expressions, they work to delegitimize the patients' stances and indirectly convey the physicians' opposing stance. Once established, these positions can be used as a basis for challenging and potentially altering the patient's attitude towards the decision, thereby making it more congruent with the physician's view. Therefore, in addition to bringing up patients' views towards treatment, we argue that physicians may use formulations of patients' stance as a resource for directing the patient towards decisions that are congruent with the physician's stance in situations with potential disagreement, whilst (ostensibly) avoiding a more authoritarian or paternalistic approach. Copyright © 2015 Elsevier Ltd. All rights reserved.

Medical students, clinical preventive services, and shared decision-making.

PubMed

Keefe, Carole W; Thompson, Margaret E; Noel, Mary Margaret

2002-11-01

Improving access to preventive care requires addressing patient, provider, and systems barriers. Patients often lack knowledge or are skeptical about the importance of prevention. Physicians feel that they have too little time, are not trained to deliver preventive services, and are concerned about the effectiveness of prevention. We have implemented an educational module in the required family practice clerkship (1) to enhance medical student learning about common clinical preventive services and (2) to teach students how to inform and involve patients in shared decision making about those services. Students are asked to examine available evidence-based information for preventive screening services. They are encouraged to look at the recommendations of various organizations and use such resources as reports from the U.S. Preventive Services Task Force to determine recommendations they want to be knowledgeable about in talking with their patients. For learning shared decision making, students are trained to use a model adapted from Braddock and colleagues(1) to discuss specific screening services and to engage patients in the process of making informed decisions about what is best for their own health. The shared decision making is presented and modeled by faculty, discussed in small groups, and students practice using Web-based cases and simulations. The students are evaluated using formative and summative performance-based assessments as they interact with simulated patients about (1) screening for high blood cholesterol and other lipid abnormalities, (2) screening for colorectal cancer, (3) screening for prostate cancer, and (4) screening for breast cancer. The final student evaluation is a ten-minute, videotaped discussion with a simulated patient about screening for colorectal cancer that is graded against a checklist that focuses primarily on the elements of shared decision making. Our medical students appear quite willing to accept shared decision making as a skill that they should have in working with patients, and this was the primary focus of the newly implemented module. However, we have learned that students need to deepen their understanding of screening services in order to help patients understand the associated benefits and risks. The final videotaped interaction with a simulated patient about colorectal cancer screening has been very helpful in making it more obvious to faculty what students believe and know about screening for colorectal cancer. As the students are asked to discuss clinical issues with patients and discuss the pros and cons of screening tests as part of the shared decision-making process, their thinking becomes transparent and it is evident where curricular changes and enhancements are required. We have found that an explicit model that allows students to demonstrate a process for shared decision making is a good introductory tool. We think it would be helpful to provide students with more formative feedback. We would like to develop faculty development programs around shared decision making so that more of our clinical faculty would model such a process with patients. Performance-based assessments are resource-intensive, but they appear to be worth the added effort in terms of enhanced skills development and a more comprehensive appraisal of student learning.

Multidrug-resistant organisms in a community living facility: tracking patient interactions and time spent in common areas.

PubMed

Bowen, Mary Elizabeth; Craighead, Jeffrey D; Klanchar, S Angelina; Nieves-Garcia, Veronica

2012-09-01

Contact precautions in community living facilities (CLF) are used to reduce the transmission of multidrug-resistant organisms (MDRO). However, this policy does not address the contamination of shared spaces, devices (eg, wheelchairs), and interactions with other patients. Using a real-time surveillance system, this study examines the time MDRO-positive patients spend interacting with others in communal areas. The findings from this study may be used to tailor MDRO policies and practices to the specific needs of CLF. Published by Mosby, Inc.

Side effect profile similarities shared between antidepressants and immune-modulators reveal potential novel targets for treating major depressive disorders.

PubMed

Sun, Yu; Narayan, Vaibhav A; Wittenberg, Gayle M

2016-10-21

Side effects, or the adverse effects of drugs, contain important clinical phenotypic information that may be useful in predicting novel or unknown targets of a drug. It has been suggested that drugs with similar side-effect profiles may share common targets. The diagnostic class, Major Depressive Disorder, is increasingly viewed as being comprised of multiple depression subtypes with different biological root causes. One 'type' of depression generating substantial interest today focuses on patients with high levels of inflammatory burden, indicated by elevated levels of C-reactive proteins (CRP) and pro-inflammatory cytokines such as interleukin 6 (IL-6). It has been suggested that drugs targeting the immune system may have beneficial effect on this subtype of depressed patients, and several studies are underway to test this hypothesis directly. However, patients have been treated with both anti-inflammatory and antidepressant compounds for decades. It may be possible to exploit similarities in clinical readouts to better understand the antidepressant effects of immune-related drugs. Here we explore the space of approved drugs by comparing the drug side effect profiles of known antidepressants and drugs targeting the immune system, and further examine the findings by comparing the human cell line expression profiles induced by them with those induced by antidepressants. We found 7 immune-modulators and 14 anti-inflammatory drugs sharing significant side effect profile similarities with antidepressants. Five of the 7 immune modulators share most similar side effect profiles with antidepressants that modulate dopamine release and/or uptake. In addition, the immunosuppressant rapamycin and the glucocorticoid alclometasone induces transcriptional changes similar to multiple antidepressants. These findings suggest that some antidepressants and some immune-related drugs may affect common molecular pathways. Our findings support the idea that certain medications aimed at the immune system may be helpful in relieving depressive symptoms, and suggest that it may be of value to test immune-modulators for antidepressant-like activity in future proof-of-concept studies.

Psychosis in adulthood is associated with high rates of ADHD and CD problems during childhood.

PubMed

Dalteg, Arne; Zandelin, Anders; Tuninger, Eva; Levander, Sten

2014-11-01

Patients diagnosed with schizophrenia display poor premorbid adjustment (PPA) in half of the cases. Attention deficit/hyperactivity disorder (ADHD) and conduct disorder (CD) are common child psychiatric disorders. These two facts have not previously been linked in the literature. To determine the prevalence of ADHD/CD problems retrospectively among patients with psychoses, and whether and to what extent the high frequency of substance abuse problems among such patients may be linked to ADHD/CD problems. ADHD and CD problems/diagnoses were retrospectively recorded in one forensic (n = 149) and two non-forensic samples (n = 98 and n = 231) of patients with a psychotic illness: schizophrenia, bipolar or other, excluding drug-induced psychoses. ADHD and CD were much more common among the patients than in the general population-the odds ratio was estimated to be greater than 5. There was no significant difference in this respect between forensic and non-forensic patients. Substance abuse was common, but substantially more common among patients with premorbid ADHD/CD problems. Previous views regarding PPA among patients with a psychotic illness may reflect an association between childhood ADHD/CD and later psychosis. The nature of this association remains uncertain: two disorders sharing some generative mechanisms or one disorder with two main clinical manifestations. Childhood ADHD and particularly CD problems contribute to the high frequency of substance abuse in such groups.

Takayasu arteritis and ulcerative colitis: high rate of co-occurrence and genetic overlap.

PubMed

Terao, Chikashi; Matsumura, Takayoshi; Yoshifuji, Hajime; Kirino, Yohei; Maejima, Yasuhiro; Nakaoka, Yoshikazu; Takahashi, Meiko; Amiya, Eisuke; Tamura, Natsuko; Nakajima, Toshiki; Origuchi, Tomoki; Horita, Tetsuya; Matsukura, Mitsuru; Kochi, Yuta; Ogimoto, Akiyoshi; Yamamoto, Motohisa; Takahashi, Hiroki; Nakayamada, Shingo; Saito, Kazuyoshi; Wada, Yoko; Narita, Ichiei; Kawaguchi, Yasushi; Yamanaka, Hisashi; Ohmura, Koichiro; Atsumi, Tatsuya; Tanemoto, Kazuo; Miyata, Tetsuro; Kuwana, Masataka; Komuro, Issei; Tabara, Yasuharu; Ueda, Atsuhisa; Isobe, Mitsuaki; Mimori, Tsuneyo; Matsuda, Fumihiko

2015-05-01

Takayasu arteritis (TAK) is a systemic vasculitis affecting large arteries and large branches of the aorta. Ulcerative colitis (UC) is a prevalent autoimmune colitis. Since TAK and UC share HLA-B*52:01 and IL12B as genetic determinants, and since there are case reports of the co-occurrence of these diseases, we hypothesized that UC is a common complication of TAK. We undertook this study to perform a large-scale analysis of TAK, both to evaluate the prevalence of concurrent cases of TAK and UC and to identify and estimate susceptibility genes shared between the 2 diseases. We analyzed a total of 470 consecutive patients with TAK from 14 institutions. We characterized patients with TAK and UC by analyzing clinical manifestations and genetic components. Genetic overlapping of TAK and UC was evaluated with the use of UC susceptibility single-nucleotide polymorphisms by comparing risk directions and effect sizes between susceptibility to the 2 diseases. Thirty of 470 patients with TAK had UC (6.4% [95% confidence interval 4.3-9.0]). This percentage was strikingly higher than that expected from the prevalence of UC in Japan. Patients with TAK complicated with UC developed TAK at an earlier stage of life (P = 0.0070) and showed significant enrichment of HLA-B*52:01 compared to TAK patients without UC (P = 1.0 × 10(-5) ) (odds ratio 12.14 [95% confidence interval 2.96-107.23]). The 110 non-HLA markers of susceptibility to UC significantly displayed common risk directions with susceptibility to TAK (P = 0.0054) and showed significant departure of permutation P values from expected P values (P < 1.0 × 10(-10) ). UC is a major complication of TAK. These 2 diseases share a significant proportion of their genetic background, and HLA-B*52:01 may play a central role in their co-occurrence. © 2015, American College of Rheumatology.

Experiences of Agency for Healthcare Research and Quality-funded projects that implemented practices for safer patient care.

PubMed

Taylor, Stephanie L; Ridgely, M Susan; Greenberg, Michael D; Sorbero, Melony E S; Teleki, Stephanie S; Damberg, Cheryl L; Farley, Donna O

2009-04-01

To synthesize lessons learned from the experiences of Agency for Healthcare Research and Quality-funded patient safety projects in implementing safe practices. Self-reported data from individual and group interviews with Original, Challenge, and Partnerships in Implementing Patient Safety (PIPS) grantees, from 2003 to 2006. Interviews with three grantee groups (n=60 total) implementing safe practice projects, with comparisons on factors influencing project implementation and sustainability. Semi-structured protocols contained open-ended questions on lessons learned and more structured questions on factors associated with project implementation and sustainability. The grantees shared common experiences, frequently identifying lessons learned regarding structural components needing to be in place before implementation, components of the implementation process, components of interventions' results needed for sustainability, changes in timelines or activities, unanticipated issues, and staff acceptance/adoption. Also, fewer Original grants had many of the factors related project to implementation/sustainability than the PIPS or Challenge grantees had. Although much of what was reported seemed like common sense, surprisingly few projects actually planned for or expected many of the barriers or facilitators they experienced during their project implementation. Others implementing practice improvements likely will share the experiences and issues identified by these implementation projects and can learn from their lessons.

Shared genetic predisposition in rheumatoid arthritis-interstitial lung disease and familial pulmonary fibrosis.

PubMed

Juge, Pierre-Antoine; Borie, Raphaël; Kannengiesser, Caroline; Gazal, Steven; Revy, Patrick; Wemeau-Stervinou, Lidwine; Debray, Marie-Pierre; Ottaviani, Sébastien; Marchand-Adam, Sylvain; Nathan, Nadia; Thabut, Gabriel; Richez, Christophe; Nunes, Hilario; Callebaut, Isabelle; Justet, Aurélien; Leulliot, Nicolas; Bonnefond, Amélie; Salgado, David; Richette, Pascal; Desvignes, Jean-Pierre; Lioté, Huguette; Froguel, Philippe; Allanore, Yannick; Sand, Olivier; Dromer, Claire; Flipo, René-Marc; Clément, Annick; Béroud, Christophe; Sibilia, Jean; Coustet, Baptiste; Cottin, Vincent; Boissier, Marie-Christophe; Wallaert, Benoit; Schaeverbeke, Thierry; Dastot le Moal, Florence; Frazier, Aline; Ménard, Christelle; Soubrier, Martin; Saidenberg, Nathalie; Valeyre, Dominique; Amselem, Serge; Boileau, Catherine; Crestani, Bruno; Dieudé, Philippe

2017-05-01

Despite its high prevalence and mortality, little is known about the pathogenesis of rheumatoid arthritis-associated interstitial lung disease (RA-ILD). Given that familial pulmonary fibrosis (FPF) and RA-ILD frequently share the usual pattern of interstitial pneumonia and common environmental risk factors, we hypothesised that the two diseases might share additional risk factors, including FPF-linked genes. Our aim was to identify coding mutations of FPF-risk genes associated with RA-ILD.We used whole exome sequencing (WES), followed by restricted analysis of a discrete number of FPF-linked genes and performed a burden test to assess the excess number of mutations in RA-ILD patients compared to controls.Among the 101 RA-ILD patients included, 12 (11.9%) had 13 WES-identified heterozygous mutations in the TERT , RTEL1 , PARN or SFTPC coding regions . The burden test, based on 81 RA-ILD patients and 1010 controls of European ancestry, revealed an excess of TERT , RTEL1 , PARN or SFTPC mutations in RA-ILD patients (OR 3.17, 95% CI 1.53-6.12; p=9.45×10 -4 ). Telomeres were shorter in RA-ILD patients with a TERT , RTEL1 or PARN mutation than in controls (p=2.87×10 -2 ).Our results support the contribution of FPF-linked genes to RA-ILD susceptibility. Copyright ©ERS 2017.

Across the Atlantic cooperation to address international challenges in eHealth and health IT: managing toward a common goal.

PubMed

Friedman, Charles P; Iakovidis, Ilias; Debenedetti, Laurent; Lorenzi, Nancy M

2009-11-01

Countries on both sides of the Atlantic Ocean have invested in health information and communication technologies. Since eHealth challenges cross borders a European Union-United States of America conference on public policies relating to health IT and eHealth was held October 20-21, 2008 in Paris, France. The conference was organized around the four themes: (1) privacy and security, (2) health IT interoperability, (3) deployment and adoption of health IT, and (4) Public Private Collaborative Governance. The four key themes framed the discussion over the two days of plenary sessions and workshops. Key findings of the conference were organized along the four themes. (1) Privacy and security: Patients' access to their own data and key elements of a patient identification management framework were discussed. (2) Health IT interoperability: Three significant and common interoperability challenges emerged: (a) the need to establish common or compatible standards and clear guidelines for their implementation, (b) the desirability for shared certification criteria and (c) the need for greater awareness of the importance of interoperability. (3) Deployment and adoption of health IT: Three major areas of need emerged: (a) a shared knowledge base and assessment framework, (b) public-private collaboration and (c) and effective organizational change strategies. (4) Public Private Collaborative Governance: Sharing and communication are central to success in this area. Nations can learn from one another about ways to develop harmonious, effective partnerships. Three areas that were identified as highest priority for collaboration included: (1) health data security, (2) developing effective strategies to ensure healthcare professionals' acceptance of health IT tools, and (3) interoperability.

Managing Patient Trust in Managed Care

PubMed Central

Davies, Huw T.O.; Rundall, Thomas G.

2000-01-01

Patient trust has been identified as an important element in the patient-physician relationship. However, common features of managed care, such as risk-sharing, utilization review, and limitations on benefits, may erode the traditionally high trust that patients have in their physicians. High trust is not always justified; rather, an optimal level of trust arises from the level of interdependence between patients and physicians. This analysis of the interrelationship between patient-physician trust and some of the key facets of managed care has important implications for managed care. A return to high levels of trust may be impracticable, and new strategies for balancing trust-building efforts by caregivers with checking mechanisms accessible to patients are recommended. PMID:11191451

Dyadic Coping in Metastatic Breast Cancer

PubMed Central

Badr, Hoda; Carmack, Cindy L.; Kashy, Deborah A.; Cristofanilli, Massimo; Revenson, Tracey A.

2011-01-01

Objective Couples facing metastatic breast cancer (MBC) must learn to cope with stressors that can affect both partners' quality of life as well as the quality of their relationship. Common dyadic coping involves taking a “we” approach, whereby partners work together to maintain their relationship while jointly managing their shared stress. This study prospectively evaluated whether common dyadic coping was associated with less cancer-related distress and greater dyadic adjustment for female MBC patients and their male partners. Design Couples (N = 191) completed surveys at the start of treatment for MBC (baseline), and 3 and 6 months later. Main Outcome Measures Cancer-related distress was assessed with the Impact of Events Scale; dyadic adjustment was assessed using the short-form of the Dyadic Adjustment Scale. Results Multilevel models using the couple as the unit of analysis showed that the effects of common positive dyadic coping on cancer-related distress significantly differed for patients and their partners. Whereas partners experienced slightly lower levels of distress, patients experienced slightly higher levels of distress. Although patients and partners who used more common negative dyadic coping experienced significantly greater distress at all times, the association was stronger for patients. Finally, using more common positive dyadic coping and less common negative dyadic coping was mutually beneficial for patients and partners in terms of greater dyadic adjustment. Conclusion Our findings underscore the importance of couples working together to manage the stress associated with MBC. Future research may benefit from greater focus on the interactions between patients and their partners to address ways that couples can adaptively cope together. PMID:20230090

77 FR 75207 - The Adams Express Company and Petroleum & Resources Corporation; Notice of Application

Federal Register 2010, 2011, 2012, 2013, 2014

2012-12-19

... the Fund's long-term total return (in relation to market price and net asset value per common share... fixed percentage of the market price of such Fund's common shares at a particular point in time, or a..., dealer, bank or other person (``financial intermediary'') holds common shares issued by a Fund in nominee...

76 FR 59458 - Stone Harbor Emerging Markets Income Fund, et al.; Notice of Application

Federal Register 2010, 2011, 2012, 2013, 2014

2011-09-26

... market price and its net asset value per common share (``NAV'')) and the relationship between such Fund's... the market price of such Fund's common shares at a particular point in time or a fixed monthly... person (``financial intermediary'') holds common shares issued by the Fund in nominee name, or otherwise...

77 FR 26052 - Invesco Total Property Market Income Fund, et al.; Notice of Application

Federal Register 2010, 2011, 2012, 2013, 2014

2012-05-02

... price of such Fund's common shares at a particular point in time, or a fixed percentage of NAV at a... broker, dealer, bank or other person (``financial intermediary'') holds common shares issued by a Fund in... outstanding common shares as frequently as monthly in any one taxable year, and as frequently as distributions...

Through Patients' Eyes: Regulation, Technology, Privacy, and the Future.

PubMed

Petersen, Carolyn

2018-04-22

Privacy is commonly regarded as a regulatory requirement achieved via technical and organizational management practices. Those working in the field of informatics often play a role in privacy preservation as a result of their expertise in information technology, workflow analysis, implementation science, or related skills. Viewing privacy from the perspective of patients whose protected health information is at risk broadens the considerations to include the perceived duality of privacy; the existence of privacy within a context unique to each patient; the competing needs inherent within privacy management; the need for particular consideration when data are shared; and the need for patients to control health information in a global setting. With precision medicine, artificial intelligence, and other treatment innovations on the horizon, health care professionals need to think more broadly about how to preserve privacy in a health care environment driven by data sharing. Patient-reported privacy preferences, privacy portability, and greater transparency around privacy-preserving functionalities are potential strategies for ensuring that privacy regulations are met and privacy is preserved. Georg Thieme Verlag KG Stuttgart.

Development and Evaluation of the American College of Surgeons NSQIP Pediatric Surgical Risk Calculator.

PubMed

Kraemer, Kari; Cohen, Mark E; Liu, Yaoming; Barnhart, Douglas C; Rangel, Shawn J; Saito, Jacqueline M; Bilimoria, Karl Y; Ko, Clifford Y; Hall, Bruce L

2016-11-01

There is an increased desire among patients and families to be involved in the surgical decision-making process. A surgeon's ability to provide patients and families with patient-specific estimates of postoperative complications is critical for shared decision making and informed consent. Surgeons can also use patient-specific risk estimates to decide whether or not to operate and what options to offer patients. Our objective was to develop and evaluate a publicly available risk estimation tool that would cover many common pediatric surgical procedures across all specialties. American College of Surgeons NSQIP Pediatric standardized data from 67 hospitals were used to develop a risk estimation tool. Surgeons enter 18 preoperative variables (demographics, comorbidities, procedure) that are used in a logistic regression model to predict 9 postoperative outcomes. A surgeon adjustment score is also incorporated to adjust for any additional risk not accounted for in the 18 risk factors. A pediatric surgical risk calculator was developed based on 181,353 cases covering 382 CPT codes across all specialties. It had excellent discrimination for mortality (c-statistic = 0.98), morbidity (c-statistic = 0.81), and 7 additional complications (c-statistic > 0.77). The Hosmer-Lemeshow statistic and graphic representations also showed excellent calibration. The ACS NSQIP Pediatric Surgical Risk Calculator was developed using standardized and audited multi-institutional data from the ACS NSQIP Pediatric, and it provides empirically derived, patient-specific postoperative risks. It can be used as a tool in the shared decision-making process by providing clinicians, families, and patients with useful information for many of the most common operations performed on pediatric patients in the US. Copyright © 2016 American College of Surgeons. Published by Elsevier Inc. All rights reserved.

Improving patient safety culture in general practice: an interview study

PubMed Central

Verbakel, Natasha J; de Bont, Antoinette A; Verheij, Theo JM; Wagner, Cordula; Zwart, Dorien LM

2015-01-01

Background When improving patient safety a positive safety culture is key. As little is known about improving patient safety culture in primary care, this study examined whether administering a culture questionnaire with or without a complementary workshop could be used as an intervention for improving safety culture. Aim To gain insight into how two interventions affected patient safety culture in everyday practice. Design and setting After conducting a randomised control trial of two interventions, this was a qualitative study conducted in 30 general practices to aid interpretation of the previous quantitative findings. Method Interviews were conducted at practice locations (n = 27) with 24 GPs and 24 practice nurses. The theory of communities of practice — in particular, its concepts of a domain, a community, and a practice — was used to interpret the findings by examining which elements were or were not present in the participating practices. Results Communal awareness of the problem was only raised after getting together and discussing patient safety. The combination of a questionnaire and workshop enhanced the interaction of team members and nourished team feelings. This shared experience also helped them to understand and develop tools and language for daily practice. Conclusion In order for patient safety culture to improve, the safety culture questionnaire was more successful when accompanied by a practice workshop. Initial discussion and negotiation of shared goals during the workshop fuelled feelings of coherence and belonging to a community wishing to learn about enhancing patient safety. Team meetings and day-to-day interactions enhanced further liaison and sharing, making patient safety a common and conscious goal. PMID:26622035

Deletion mapping of 22q11 in CATCH22 syndrome: Identification of a second critical region

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

Kurahashi, Hiroki; Nakayama, Takahiro; Nishisho, Isamu

1996-06-01

The deletion at 22q11.2 implicates a variety of congenital anomaly syndromes, for which the acronym CATCH22 has been proposed . Most patients with these syndromes share the common large deletion spanning 1-2 Mb, while the phenotypic variability of the patients does not seem to correlate with the extent of the deletions. On the basis of the deletions of rare cases with unbalanced translocation, the shortest region of overlap (SRO) had been identified in the most-centromeric region of the common large deletion. One patient (ADU) has been reported to carry a balanced translocation with the breakpoint located in the SRO. Recently,more » three transcripts were identified at or very close to the ADU breakpoint (ADUBP), making them strong candidates for CATCH22 syndrome. Here, we describe one patient with a unique deletion at 22q11.2 revealed by quantitative hybridization and/or FISH with six DNA markers in the common large deletion. The patient was dizygous at loci within the SRO and hemizygous only at the most-telomeric locus in the common large deletion. This finding suggests that there must be another critical region in the common large deletion besides the breakpoint of the ADU and that haploinsufficiency of genes in this deletion may also play a major role in CATCH22 pathogenesis. 15 refs., 3 figs.« less

Dual pathology of corticobasal degeneration and Parkinson's disease in a patient with clinical features of progressive supranuclear palsy.

PubMed

Mooney, Tomin; Tampiyappa, Anthony; Robertson, Thomas; Grimley, Rohan; Burke, Chris; Ng, Kenneth; Patrikios, Peter

2011-01-01

Corticobasal degeneration and Parkinson's disease are pathologically distinct disorders with unique histological and biochemical features of a tauopathy and a-synucleinopathy respectively. We report the first case of co-occurrence of these pathologies in the same patient. Convergence of such distinctly separate neuropathology in the same brain highlights the need for extensive brain banking and further research in supporting the hypothesis that tauopathies and a-synucleinopathies might share common pathogenic mechanisms.

Fears, Feelings, and Facts: Interactively Communicating Benefits and Risks of Medical Radiation With Patients

PubMed Central

Dauer, Lawrence T.; Thornton, Raymond H.; Hay, Jennifer L.; Balter, Rochelle; Williamson, Matthew J.; St. Germain, Jean

2013-01-01

OBJECTIVE As public awareness of medical radiation exposure increases, there has been heightened awareness among patients and physicians of the importance of holistic benefit-and-risk discussions in shared medical decision making. CONCLUSION We examine the rationale for informed consent and risk communication, draw on the literature on the psychology of radiation risk communication to increase understanding, examine methods commonly used to communicate radiation risk, and suggest strategies for improving communication about medical radiation benefits and risk. PMID:21427321

The value of Autoimmune Syndrome Induced by Adjuvant (ASIA) - Shedding light on orphan diseases in autoimmunity.

PubMed

Segal, Yahel; Dahan, Shani; Sharif, Kassem; Bragazzi, Nicola Luigi; Watad, Abdulla; Amital, Howard

2018-05-01

Autoimmune Syndrome Induced by Adjuvant (ASIA) is a definition aimed to describe the common etiological process at the root of five clinical entities sharing similar symptomatology: macrophagic myofasciitis syndrome (MMF), Gulf War Syndrome (GWS), sick building syndrome (SBS), siliconosis, and post vaccination autoimmune phenomena. ASIA illustrates the role of environmental immune stimulating agents, or adjuvants, in the instigation of complex autoimmune reactions among individuals bearing a genetic preponderance for autoimmunity. The value of ASIA lies first in the acknowledgment it provides for patients suffering from these as yet ill-defined medical conditions. Equally important is the spotlight it sheds for further research of these poorly understood conditions sharing a common pathogenesis. In this article we elaborate on the significance of ASIA, review the current evidence in support of the syndrome, and address recent reservations raised regarding its validity. Copyright © 2018 Elsevier B.V. All rights reserved.

[Depression and epilepsy : Two clinical pictures with common causes?].

PubMed

Borgmann, M; Holtkamp, M; Adli, M; Behr, J

2016-07-01

Epilepsy and depressive disorders show a high rate of comorbidity. Thus, neurobiological similarities and a bidirectional relationship in terms of pathogenesis have been suggested. The aim of this article is to present the common neurobiological features of both disorders, to characterize the bidirectional relationship and to provide an overview of therapeutic consequences. A review of the current literature and evaluation of studies on the topics of depression and epilepsy are presented. Epilepsy and depression share common neurobiological features. In epileptic patients depression should be diagnosed early and reliably as the successful treatment has a great influence on the prognosis, quality of life and suicide risk in these individuals. In therapeutic doses, antidepressive medication with noradrenergic and specific serotonergic antidepressants (NaSSA) or selective serotonin reuptake inhibitors (SSRI) imparts no clinically relevant epileptogenic potential; however, it increases the quality of life and could have anticonvulsant effects in patients with epilepsy. Clomipramine, bupropion and maprotiline, however, should not be administered to patients with epilepsy as they are known to lower the seizure threshold.

Could inter-agency working reduce emergency department attendances due to alcohol consumption?

PubMed

Benger, J; Carter, R

2008-06-01

Excess alcohol consumption and associated harms in terms of health, crime and disorder have been highlighted by the government and media, causing considerable public concern. This study quantified the number of patient attendances at an urban adult and children's emergency department (ED) directly attributable to alcohol intoxication, and investigated ways in which the inter-agency sharing of anonymised information could be used to design, implement and monitor interventions to reduce these harms. Intoxicated patients attending either the adult or children's ED were prospectively identified by qualified nursing staff and anonymised data collected by a dedicated researcher. Collaboration and data sharing between health, police, social services, university experts and local authorities was achieved through the establishment of steering and operational groups with agreed objectives and the formation of a shared anonymised database. The proportion of patients attending the ED as a result of alcohol intoxication was 4% in adults and <1% in children. 70% of patients were male, with a mean age of 30 years, and 72% attended between 20.00 and 08.00 h. The most common reason for ED attendance was accident (34%), followed closely by assault (30%). 27% of patients had done most of their drinking at home, 36% in a pub and 16% in a nightclub. Inter-agency collaboration proved highly successful: pooling of anonymised data created a much clearer picture of the extent of the problem and immediately suggested strategies for intervention. The initiative to achieve inter-agency collaboration and data sharing was highly successful, with clear potential for the development and implementation of interventions that will reduce ED attendance due to excess alcohol consumption.

Shared Care: A Quality Improvement Initiative to Optimize Primary Care Management of Constipation

PubMed Central

Vernacchio, Louis; Trudell, Emily; Antonelli, Richard; Nurko, Samuel; Leichtner, Alan M.; Lightdale, Jenifer R.

2015-01-01

BACKGROUND: Pediatric constipation is commonly managed in the primary care setting, where there is much variability in management and specialty referral use. Shared Care is a collaborative quality improvement initiative between Boston Children’s Hospital and the Pediatric Physician’s Organization at Children’s (PPOC), through which subspecialists provide primary care providers with education, decision-support tools, pre-referral management recommendations, and access to advice. We investigated whether Shared Care reduces referrals and improves adherence to established clinical guidelines. METHODS: We reviewed the primary care management of patients 1 to 18 years old seen by a Boston Children’s Hospital gastroenterologist and diagnosed with constipation who were referred from PPOC practices in the 6 months before and after implementation of Shared Care. Charts were assessed for patient factors and key components of management. We also tracked referral rates for all PPOC patients for 29 months before implementation and 19 months after implementation. RESULTS: Fewer active patients in the sample were referred after implementation (61/27 365 [0.22%] vs 90/27 792 [0.36%], P = .003). The duration of pre-referral management increased, and the rate of fecal impaction decreased after implementation. No differences were observed in documentation of key management recommendations. Analysis of medical claims showed no statistically significant change in referrals. CONCLUSIONS: A multifaceted initiative to support primary care management of constipation can alter clinical care, but changes in referral behavior and pre-referral management may be difficult to detect and sustain. Future efforts may benefit from novel approaches to provider engagement and systems integration. PMID:25896837

Clinical and molecular aspects of familial hypercholesterolemia in Ibero-American countries.

PubMed

Santos, Raul D; Bourbon, Mafalda; Alonso, Rodrigo; Cuevas, Ada; Vasques-Cardenas, Norma Alexandra; Pereira, Alexandre C; Merchan, Alonso; Alves, Ana Catarina; Medeiros, Ana Margarida; Jannes, Cinthia E; Krieger, Jose E; Schreier, Laura; Perez de Isla, Leopoldo; Magaña-Torres, Maria Teresa; Stoll, Mario; Mata, Nelva; Dell Oca, Nicolas; Corral, Pablo; Asenjo, Sylvia; Bañares, Virginia G; Reyes, Ximena; Mata, Pedro

There is little information about familial hypercholesterolemia (FH) epidemiology and care in Ibero-American countries. The Ibero-American FH network aims at reducing the gap on diagnosis and treatment of this disease in the region. To describe clinical, molecular, and organizational characteristics of FH diagnosis in Argentina, Brazil, Chile, Colombia, Mexico, Portugal, Spain, and Uruguay. Descriptive analysis of country data related to FH cascade screening, molecular diagnosis, clinical practice guidelines, and patient organization presence in Ibero-America. From a conservative estimation of an FH prevalence of 1 of 500 individuals, there should be 1.2 million heterozygous FH individuals in Ibero-America and roughly 27,400 were diagnosed so far. Only Spain, Brazil, Portugal, and Uruguay have active cascade screening programs. The prevalence of cardiovascular disease ranged from 10% to 42% in member countries, and the highest molecular identification rates are seen in Spain, 8.3%, followed by Portugal, 3.8%, and Uruguay with 2.5%. In the 3 countries with more FH patients identified (Spain, Portugal, and Brazil) between 10 and 15 mutations are responsible for 30% to 47% of all FH cases. Spain and Portugal share 5 of the 10 most common mutations (4 in low density lipoprotein receptor [LDLR] and the APOB3527). Spain and Spanish-speaking Latin American countries share 6 of the most common LDLR mutations and the APOB3527. LDL apheresis is available only in Spain and Portugal and not all countries have specific FH diagnostic and treatment guidelines as well as patient organizations. Ibero-American countries share similar mutations and gaps in FH care. Copyright © 2016 National Lipid Association. Published by Elsevier Inc. All rights reserved.

Erectile dysfunction in chronic kidney disease: From pathophysiology to management

PubMed Central

Papadopoulou, Eirini; Varouktsi, Anna; Lazaridis, Antonios; Boutari, Chrysoula; Doumas, Michael

2015-01-01

Chronic kidney disease (CKD) is encountered in millions of people worldwide, with continuously rising incidence during the past decades, affecting their quality of life despite the increase of life expectancy in these patients. Disturbance of sexual function is common among men with CKD, as both conditions share common pathophysiological causes, such as vascular or hormonal abnormalities and are both affected by similar coexisting comorbid conditions such as cardiovascular disease, hypertension and diabetes mellitus. The estimated prevalence of erectile dysfunction reaches 70% in end stage renal disease patients. Nevertheless, sexual dysfunction remains under-recognized and under-treated in a high proportion of these patients, a fact which should raise awareness among clinicians. A multifactorial approach in management and treatment is undoubtedly required in order to improve patients’ quality of life and cardiovascular outcomes. PMID:26167462

'What the hell is water?' How to use deliberate clinical inertia in common emergency department situations.

PubMed

Egerton-Warburton, Diana; Cullen, Louise; Keijzers, Gerben; Fatovich, Daniel M

2018-06-01

Appropriate deliberate clinical inertia refers to the art of doing nothing as a positive clinical response. It includes shared decision-making to improve patient care with the use of clinical judgement. We discuss common clinical scenarios where the use of deliberate clinical inertia can occur. The insertion of peripheral intravenous cannulae, investigating patients with suspected renal colic and the investigation of low risk chest pain are all opportunities for the thoughtful clinician to 'stand there' and use effective patient communication to avoid low value tests and procedures. Awareness is key to identifying these opportunities to practice deliberate clinical inertia, as many of the situations may be so much a part of our environment that they are hidden in plain view. © 2018 Australasian College for Emergency Medicine and Australasian Society for Emergency Medicine.

Teamwork: a concept analysis.

PubMed

Xyrichis, Andreas; Ream, Emma

2008-01-01

This paper is a report of an analysis of the concept of teamwork. Teamwork is seen as an important facilitator in delivering quality healthcare services internationally. However, research studies of teamwork in health care are criticized for lacking a basic conceptual understanding of what this concept represents. A universal definition for healthcare settings and professionals is missing from published literature. Walker and Avant's approach was used to guide this concept analysis. Literature searches used bibliographic databases (Medline, CINAHL, Web of Science, Proquest CSA), internet search engines (GoogleScholar), and hand searches. Literature published between 1976 and 2006 was reviewed but only material in English was included. Based on the analysis undertaken, teamwork is proposed as a dynamic process involving two or more healthcare professionals with complementary backgrounds and skills, sharing common health goals and exercising concerted physical and mental effort in assessing, planning, or evaluating patient care. This is accomplished through interdependent collaboration, open communication and shared decision-making, and generates value-added patient, organizational and staff outcomes. Praising the value of teamwork without a common understanding of what this concept represents endangers both research into this way of working and its effective utilization in practice. The proposed definition helps reconcile discrepancies between how this concept is understood by nurses and doctors, as well as allied health professionals. A common understanding can facilitate communication in educational, research and clinical settings and is imperative for improving clarity and validity of future research.

Improving acute patient flow and resolving emergency department overcrowding in New Zealand hospitals--the major challenges and the promising initiatives.

PubMed

Ardagh, Michael W; Tonkin, Gary; Possenniskie, Clare

2011-10-14

To determine the most common challenges to improving acute patient flow and resolving emergency department (ED) overcrowding in New Zealand hospitals, and to share some of the promising initiatives that have been implemented in response to them. To facilitate progress towards achievement of the Shorter Stays in Emergency Departments Health Target (the Target), the authors visited every District Health Board (DHB) in New Zealand. These visits followed a standardised visit format and subsequent to each visit a report was produced that noted the observed challenges, initiatives and successes in relation to the DHB's pursuit of the Target. Using these reports, the significant challenges and the promising initiatives across all of the DHBs were collated. Access to hospital beds, access to diagnostic tests and inpatient team delays were the most common challenges, followed by increased demand for ED services, ED facility deficiencies, ED staff deficiencies, delay to discharge of inpatients, difficulty engaging hospital clinical staff in changes, difficulty accessing aged care beds, and problems at nights and weekends. Promising initiatives were noted in relation to each of these. To improve acute care, resolve ED overcrowding and achieve the Target we need a comprehensive, whole of system approach and some significant changes to the way we use our physical and human resources. To address common challenges we need to share our experiences and expertise.

Founder haplotype analysis of Fanconi anemia in the Korean population finds common ancestral haplotypes for a FANCG variant.

PubMed

Park, Joonhong; Kim, Myungshin; Jang, Woori; Chae, Hyojin; Kim, Yonggoo; Chung, Nack-Gyun; Lee, Jae-Wook; Cho, Bin; Jeong, Dae-Chul; Park, In Yang; Park, Mi Sun

2015-05-01

A common ancestral haplotype is strongly suggested in the Korean and Japanese patients with Fanconi anemia (FA), because common mutations have been frequently found: c.2546delC and c.3720_3724delAAACA of FANCA; c.307+1G>C, c.1066C>T, and c.1589_1591delATA of FANCG. Our aim in this study was to investigate the origin of these common mutations of FANCA and FANCG. We genotyped 13 FA patients consisting of five FA-A patients and eight FA-G patients from the Korean FA population. Microsatellite markers used for haplotype analysis included four CA repeat markers which are closely linked with FANCA and eight CA repeat markers which are contiguous with FANCG. As a result, Korean FA-A patients carrying c.2546delC or c.3720_3724delAAACA did not share the same haplotypes. However, three unique haplotypes carrying c.307+1G>C, c.1066C > T, or c.1589_1591delATA, that consisted of eight polymorphic loci covering a flanking region were strongly associated with Korean FA-G, consistent with founder haplotypes reported previously in the Japanese FA-G population. Our finding confirmed the common ancestral haplotypes on the origins of the East Asian FA-G patients, which will improve our understanding of the molecular population genetics of FA-G. To the best of our knowledge, this is the first report on the association between disease-linked mutations and common ancestral haplotypes in the Korean FA population. © 2015 John Wiley & Sons Ltd/University College London.

Association between genetic risk scoring for schizophrenia and bipolar disorder with regional subcortical volumes.

PubMed

Caseras, X; Tansey, K E; Foley, S; Linden, D

2015-12-08

Previous research has shown coincident abnormal regional brain volume in patients with schizophrenia (SCZ) and bipolar disorder (BD) compared with controls. Whether these abnormalities are genetically driven or explained by secondary effects of the disorder or environmental factors is unknown. We aimed to investigate the association between genetic risk scoring (GRS) for SCZ and BD with volume of brain areas previously shown to be different between these clinical groups and healthy controls. We obtained subcortical brain volume measures and GRS for SCZ and BD from a sample of 274 healthy volunteers (71.4% females, mean age 24.7 (s.d. 6.9)). Volume of the globus pallidus was associated with the shared GRS between SCZ and BD, and also with the independent GRS for each of these disorders. Volume of the amygdala was associated with the non-shared GRS between SCZ and BD, and with the independent GRS for BD. Our results for volume of the globus pallidus support the idea of SCZ and BD sharing a common underlying neurobiological abnormality associated with a common genetic risk for both these disorders. Results for volume of the amygdala, though, would suggest the existence of a distinct mechanism only associated with genetic risk for BD. Finally, the lack of association between genetic risk and volume of most subcortical structures suggests that the volumetric differences reported in patient-control comparisons may not be genetically driven, but a consequence of the disorder or co-occurring environmental factors.

The Electronic Data Methods (EDM) forum for comparative effectiveness research (CER).

PubMed

Holve, Erin; Segal, Courtney; Lopez, Marianne Hamilton; Rein, Alison; Johnson, Beth H

2012-07-01

AcademyHealth convened the Electronic Data Methods (EDM) Forum to collect, synthesize, and share lessons from eleven projects that are building infrastructure and using electronic clinical data for comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). This paper provides a brief review of participating projects and provides a framework of common challenges. EDM Forum staff conducted a text review of relevant grant programs' funding opportunity announcements; projects' research plans; and available information on projects' websites. Additional information was obtained from presentations provided by each project; phone calls with project principal investigators, affiliated partners, and staff from the Agency for Healthcare Research and Quality (AHRQ); and six site visits. Projects participating in the EDM Forum are building infrastructure and developing innovative strategies to address a set of methodological, and data and informatics challenges, here identified in a common framework. The eleven networks represent more than 20 states and include a range of partnership models. Projects vary substantially in size, from 11,000 to more than 7.5 million individuals. Nearly all of the AHRQ priority populations and conditions are addressed. In partnership with the projects, the EDM Forum is focused on identifying and sharing lessons learned to advance the national dialogue on the use of electronic clinical data to conduct CER and PCOR. These efforts have the shared goal of addressing challenges in traditional research studies and data sources, and aim to build infrastructure and generate evidence to support a learning health care system that can improve patient outcomes.

Drawings reflect a new dimension of the psychological impact of long-term remission of Cushing's syndrome.

PubMed

Tiemensma, Jitske; Daskalakis, Nikolaos P; van der Veen, Else M; Ramondt, Steven; Richardson, Stephanie K; Broadbent, Elizabeth; Romijn, Johannes A; Pereira, Alberto M; Biermasz, Nienke R; Kaptein, Adrian A

2012-09-01

Drawings can be used to assess perceptions of patients about their disease. We aimed to explore the utility of the drawing test and its relation to illness perceptions, quality of life (QoL), and clinical disease severity in patients after long-term remission of Cushing's syndrome. We conducted a cross-sectional study including 47 patients with long-term remission of Cushing's syndrome. Patients completed the drawing test, the Illness Perception Questionnaire-Revised, the Short-Form 36, the EuroQoL-5D, and the Cushing QoL. The Cushing's syndrome severity index was scored based on medical records. Characteristics of the drawings were strongly associated with the Cushing's syndrome severity index and severity ratings of health professionals (all P < 0.02). In addition, patients perceived a dramatic change in body size during the active state of the disease compared to the healthy state before disease. Patients reported that their body does not completely return to the original size (i.e. before disease) after treatment. There were no clear associations between characteristics of the drawings and QoL or illness perceptions. This indicates that drawings and QoL or illness perceptions do not share multiple common properties and measure different aspects/dimensions of the disease process. Drawings reflect a new dimension of the psychological impact of long-term remission of Cushing's syndrome because drawings do not share common properties with parameters of QoL or illness perceptions, but do represent the clinical severity of the disease. The assessment of drawings may enable doctors to appreciate the perceptions of patients with long-term remission of Cushing's syndrome and will lead the way in dispelling idiosyncratic beliefs.

Optimal health insurance: the case of observable, severe illness.

PubMed

Chernew, M E; Encinosa, W E; Hirth, R A

2000-09-01

We explore optimal cost-sharing provisions for insurance contracts when individuals have observable, severe diseases with a discrete number of medically appropriate treatment options. Variation in preferences for alternative treatments is unobserved by the insurer and non-contractible. Interest in such situations is increasingly common, exemplified by disease carve-out programs and shared decision-making (SDM) tools. We demonstrate that optimal insurance charges a copay to patients choosing the high-cost treatment and provides consumers of the low-cost treatment a cash payment. A simulation of the effect of such a policy, based on prostate cancer, indicates a substantial reduction in moral hazard.

Individualised patient care: a framework for guidelines.

PubMed

Redfern, S

It is assumed that individualised patient care (IPC) benefits both patients and nurses. This study set out to clarify what IPC means to nurses and how they practise it, as well as how it is experienced by patients. With some exceptions, IPC was not practised widely in the seven wards used as case studies. Even in the wards where it was more common, there were some examples of bad practice. Factors that facilitated IPC were: the personal qualities of the nurses; a shared understanding among the ward team of the goals of nursing care and what constitutes good practice; levels of staffing and skill mix; effective leadership and management of nursing work.

Homeopathic approach in the treatment of patients with mental disability.

PubMed

Dolce Filho, R

2006-01-01

The author describes his experience assisting mentally disabled patients with homeopathy. In these patients' anamneses, common traits shared by some syndromes, pathologies and behaviour, were taken into consideration, mainly to choose the most characteristic symptoms in each case. The study includes 58 cases of patients suffering from this pathology: 28 females and 30 males, ages ranging from 1 to 49 years (mean 20). Forty-seven had some improvement. Homeopathy is a useful alternative to relieve pathologies associated with mental disability. In those cases in which there were similarities between remedy and whole symptomatology, improvements in adaptation skills and in overall health were observed.

Interaction and Communication in the Process of Education and Shared Common Area in the Classroom

ERIC Educational Resources Information Center

Karadag, Engin; Caliskan, Nihat

2009-01-01

School is an institution that plays a significant role in a child's life. Being an active employee in this institution, a teacher should be democratic, tender, patient, reliable and humorous to his/her students during the interaction and communication processes so that the teaching and learning processes are affected positively. It is important to…

Benefits of teaching medical students how to communicate with patients having serious illness: comparison of two approaches to experiential, skill-based, and self-reflective learning.

PubMed

Ellman, Matthew S; Fortin, Auguste H

2012-06-01

Innovative approaches are needed to teach medical students effective and compassionate communication with seriously ill patients. We describe two such educational experiences in the Yale Medical School curriculum for third-year medical students: 1) Communicating Difficult News Workshop and 2) Ward-Based End-of-Life Care Assignment. These two programs address educational needs to teach important clinical communication and assessment skills to medical students that previously were not consistently or explicitly addressed in the curriculum. The two learning programs share a number of educational approaches driven by the learning objectives, the students' development, and clinical realities. Common educational features include: experiential learning, the Biopsychosocial Model, patient-centered communication, integration into clinical clerkships, structured skill-based learning, self-reflection, and self-care. These shared features - as well as some differences - are explored in this paper in order to illustrate key issues in designing and implementing medical student education in these areas.

Patient-directed Internet-based Medical Image Exchange: Experience from an Initial Multicenter Implementation

PubMed Central

Greco, Giampaolo; Patel, Anand S.; Lewis, Sara C.; Shi, Wei; Rasul, Rehana; Torosyan, Mary; Erickson, Bradley J.; Hiremath, Atheeth; Moskowitz, Alan J.; Tellis, Wyatt M.; Siegel, Eliot L.; Arenson, Ronald L.; Mendelson, David S.

2015-01-01

Rationale and Objectives Inefficient transfer of personal health records among providers negatively impacts quality of health care and increases cost. This multicenter study evaluates the implementation of the first Internet-based image-sharing system that gives patients ownership and control of their imaging exams, including assessment of patient satisfaction. Materials and Methods Patients receiving any medical imaging exams in four academic centers were eligible to have images uploaded into an online, Internet-based personal health record. Satisfaction surveys were provided during recruitment with questions on ease of use, privacy and security, and timeliness of access to images. Responses were rated on a five-point scale and compared using logistic regression and McNemar's test. Results A total of 2562 patients enrolled from July 2012 to August 2013. The median number of imaging exams uploaded per patient was 5. Most commonly, exams were plain X-rays (34.7%), computed tomography (25.7%), and magnetic resonance imaging (16.1%). Of 502 (19.6%) patient surveys returned, 448 indicated the method of image sharing (Internet, compact discs [CDs], both, other). Nearly all patients (96.5%) responded favorably to having direct access to images, and 78% reported viewing their medical images independently. There was no difference between Internet and CD users in satisfaction with privacy and security and timeliness of access to medical images. A greater percentage of Internet users compared to CD users reported access without difficulty (88.3% vs. 77.5%, P < 0.0001). Conclusion A patient-directed, interoperable, Internet-based image-sharing system is feasible and surpasses the use of CDs with respect to accessibility of imaging exams while generating similar satisfaction with respect to privacy. PMID:26625706

Patient-directed Internet-based Medical Image Exchange: Experience from an Initial Multicenter Implementation.

PubMed

Greco, Giampaolo; Patel, Anand S; Lewis, Sara C; Shi, Wei; Rasul, Rehana; Torosyan, Mary; Erickson, Bradley J; Hiremath, Atheeth; Moskowitz, Alan J; Tellis, Wyatt M; Siegel, Eliot L; Arenson, Ronald L; Mendelson, David S

2016-02-01

Inefficient transfer of personal health records among providers negatively impacts quality of health care and increases cost. This multicenter study evaluates the implementation of the first Internet-based image-sharing system that gives patients ownership and control of their imaging exams, including assessment of patient satisfaction. Patients receiving any medical imaging exams in four academic centers were eligible to have images uploaded into an online, Internet-based personal health record. Satisfaction surveys were provided during recruitment with questions on ease of use, privacy and security, and timeliness of access to images. Responses were rated on a five-point scale and compared using logistic regression and McNemar's test. A total of 2562 patients enrolled from July 2012 to August 2013. The median number of imaging exams uploaded per patient was 5. Most commonly, exams were plain X-rays (34.7%), computed tomography (25.7%), and magnetic resonance imaging (16.1%). Of 502 (19.6%) patient surveys returned, 448 indicated the method of image sharing (Internet, compact discs [CDs], both, other). Nearly all patients (96.5%) responded favorably to having direct access to images, and 78% reported viewing their medical images independently. There was no difference between Internet and CD users in satisfaction with privacy and security and timeliness of access to medical images. A greater percentage of Internet users compared to CD users reported access without difficulty (88.3% vs. 77.5%, P < 0.0001). A patient-directed, interoperable, Internet-based image-sharing system is feasible and surpasses the use of CDs with respect to accessibility of imaging exams while generating similar satisfaction with respect to privacy. Copyright © 2015 The Association of University Radiologists. Published by Elsevier Inc. All rights reserved.

Training clinicians in how to use patient-reported outcome measures in routine clinical practice.

PubMed

Santana, Maria J; Haverman, Lotte; Absolom, Kate; Takeuchi, Elena; Feeny, David; Grootenhuis, Martha; Velikova, Galina

2015-07-01

Patient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A key issue limiting successful implementation is clinicians' lack of knowledge on how to effectively utilize PROs data in their clinical encounters. Using a change management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant and paediatrics), in three countries with different healthcare systems, thus providing a rare opportunity to pull out common approaches whilst recognizing specific settings. For each program, we describe the clinical and organizational setting, the program planning and development, the content of the training session with supporting material, subsequent monitoring of PROs use and evidence of adoption. The common successful components and practical steps are identified, leading to discussion and future recommendations. The results of the three training programs are described as the implementation. In the oncology program, PRO data have been developed and are currently evaluated; in the lung transplant program, PRO data are used in daily practice and the integration with electronic patient records is under development; and in the paediatric program, PRO data are fully implemented with around 7,600 consultations since the start of the implementation. Adult learning programs teaching clinicians how to use and act on PROs in clinical practice are a key steps in supporting patient engagement and participation in shared decision-making. Researchers and clinicians from different clinical areas should collaborate to share ideas, develop guidelines and promote good practice in patient-centred care.

Revitalization of the shared commons: education for sustainability and marginalized cultures

NASA Astrophysics Data System (ADS)

Glasson, George E.

2010-06-01

Education for sustainability provides a vision for revitalizing the environmental commons while preserving cultural traditions and human rights. What happens if the environmental commons is shared by two politically disparate and conflicting cultures? As in many shared common lands, what happens if one culture is dominant and represents a more affluent society with more resources and educational opportunities? In the case of the Tal and Alkaher study (Cult Stud Sci Edu, 2009), asymmetric power differences between the dominant Israeli society and the minority Arab population yielded different environmental narratives and perceptions of students involved in learning about a mediated conflict in national park land. Similarly, marginalized indigenous cultures in Malawi, Africa share common lands with the dominant European landowners but have distinctly different environmental narratives. Although indigenous ways of living with nature contribute to the sustainability of the environment and culture, African funds of knowledge are conspicuously absent from the Eurocentric school science curriculum. In contrast, examples of experiential learning and recent curriculum development efforts in sustainability science in Malawi are inclusive of indigenous knowledge and practices and are essential for revitalizing the shared commons.

[Benchmarking in patient identification: An opportunity to learn].

PubMed

Salazar-de-la-Guerra, R M; Santotomás-Pajarrón, A; González-Prieto, V; Menéndez-Fraga, M D; Rocha Hurtado, C

To perform a benchmarking on the safe identification of hospital patients involved in "Club de las tres C" (Calidez, Calidad y Cuidados) in order to prepare a common procedure for this process. A descriptive study was conducted on the patient identification process in palliative care and stroke units in 5medium-stay hospitals. The following steps were carried out: Data collection from each hospital; organisation and data analysis, and preparation of a common procedure for this process. The data obtained for the safe identification of all stroke patients were: hospital 1 (93%), hospital 2 (93.1%), hospital 3 (100%), and hospital 5 (93.4%), and for the palliative care process: hospital 1 (93%), hospital 2 (92.3%), hospital 3 (92%), hospital 4 (98.3%), and hospital 5 (85.2%). The aim of the study has been accomplished successfully. Benchmarking activities have been developed and knowledge on the patient identification process has been shared. All hospitals had good results. The hospital 3 was best in the ictus identification process. The benchmarking identification is difficult, but, a useful common procedure that collects the best practices has been identified among the 5 hospitals. Copyright © 2017 SECA. Publicado por Elsevier España, S.L.U. All rights reserved.

Ethical concerns: comparison of values from two cultures.

PubMed

Wros, Peggy L; Doutrich, Dawn; Izumi, Shigeko

2004-06-01

The present study was a secondary analysis of data from two phenomenological studies of nurses in the USA and Japan. The study incorporated hermeneutics and feminist methodologies to answer the following questions. Are there common values and ethical concerns and values within the nursing cultures of Japan and the USA? What are some commonalities and differences between Japanese nurses' ethical concerns and those of American nurses? Findings indicated that nurses from the USA and Japan share common values and ethical concerns as professional nurses, including competence, respect for the patient as a person, responsibility, relationship and connection, importance of the family, caring, good death, comfort, truth-telling, understanding the patient/situation, and anticipatory care. Although ethical concerns are similar, related background meanings and actions often look different between cultures; truth-telling is described as an example. Nurses in each country also hold unique values not found in the nursing practice of the other country. Understanding these commonalities and differences is critical for the development of global nursing ethics.

Common idiotypes expressed on human, monoclonal, abnormal immunoglobulins and cryoglobulins with polyreactive autoantibody activities.

PubMed Central

Barbouche, M R; Guilbert, B; Makni, S; Gorgi, Y; Ayed, K; Avrameas, S

1993-01-01

Several human monoclonal immunoglobulins with the same autoantibody activity have been shown to have cross-reactive idiotypes (CRI). In this study, using polyclonal anti-idiotypic antibodies, we found that 28% of human monoclonal immunoglobulins with polyreactive autoantibody activity from myeloma, Waldenström's macroglobulinaemia and cryoglobulinaemia patients shared common idiotype(s). Furthermore, the latter were expressed on human and murine natural MoAbs (respectively in 12% and 22% of the clones tested) and on human IgG preparations used for therapeutic intravenous injections (IVIg) and which contain natural antibodies. These findings suggest that monoclonal immunoglobulins could arise from the proliferation of a clone that normally produces a natural antibody. The existence of common idiotype(s) between monoclonal immunoglobulins and IVIg could be relevant to the improvement noted after treatment with IVIg in patients suffering from peripheral neuropathies associated with monoclonal gammopathy. PMID:8428386

Genetic overlap between polycystic ovary syndrome and bipolar disorder: the endophenotype hypothesis.

PubMed

Jiang, Bowen; Kenna, Heather A; Rasgon, Natalie L

2009-12-01

Polycystic Ovary Syndrome (PCOS) is a polygenic disorder caused by the interaction of susceptible genomic polymorphisms with environmental factors. PCOS, characterized by hyperandrogenism and menstrual abnormalities, has a higher prevalence in women with Bipolar Disorder (BD). Theories explaining this high prevalence have included the effect of PCOS itself or the effect of drugs such as Valproate, which may cause PCOS either directly or indirectly. Incidentally, metabolic abnormalities are observed in both bipolar and PCOS patients. Endophenotypes such as insulin resistance, obesity, and hyperglycemia are common among BD and PCOS patients, suggesting some degree of pathophysiological overlap. Since both BD and PCOS are complex polygenetic diseases, the endophenotype overlap may be the result of common genetic markers. This paper postulates that shared clinical endophenotypes between PCOS and BD indicate common pathophysiological platforms and will review these for the potential of genetic overlap between the two disorders.

[Globalization and its impact on pharmacy services in the Slovak Republic].

PubMed

Malovecká, Ivona; Minarovič, Igor; Mináriková, Daniela; Lehocká, Lubica; Snopková, Miroslava; Foltán, Viliam

2014-02-01

Public pharmacies are excellent medical facilities having the largest number of contacts with patients. They are the facilities of the first and last contact with the health care system for the patient. Public pharmacies are unique and easily accessible places in the health care system with a high proficiency in the provision of pharmaceutical care and highly qualified medical staff. The aim of this paper was to determine geographical-demographic situation, the legal form of the ownership of public pharmacies, and the owner share of pharmacists on the capital of public pharmacies in Slovakia. The number on of providers of pharmaceutical care depends on the population at the level of regions, districts, towns and villages with differing tightness of binding. The most common legal form of the provider of pharmaceutical care in Slovakia in public pharmacies were limited companies with 73.6% share, a sole proprietor - pharmacist had 23.9%, and public limited companies had 1.3%. In the branches of public pharmacies the limited companies had 73.4% share, a sole proprietor - pharmacist had 26%, public limited companies had 1%. The owner share of the pharmacist on the capital in public pharmacies was 50.4%, and in the branches of public pharmacies it was 66%, owned by a sole proprietor or limited company.

The Crosstalk of Pathways Involved in Immune Response Maybe the Shared Molecular Basis of Rheumatoid Arthritis and Type 2 Diabetes

PubMed Central

Ge, Na; Jiang, Miao; Li, Li; Bian, Yanqin; Xu, Gang; Bian, Zhaoxiang; Zhang, Ge; Lu, Aiping

2015-01-01

Rheumatoid arthritis (RA) and Type 2 diabetes (T2D) are both systemic diseases linked with altered immune response, moderate mortality when present together. The treatment for both RA and T2D are not satisfied, partly because of the linkage between them has not yet been appreciated. A comprehensive study for the potential associations between the two disorders is needed. In this study, we used RNA sequencing to explore the differently expressed genes (DEGs) in peripheral blood mononuclear cells (PBMC) of 10 RA and 10 T2D patients comparing with 10 healthy volunteers (control). We used bioinformatics analysis and the Ingenuity Pathways Analysis (IPA) to predict the commonalities on signaling pathways and molecular networks between those two diseases. 212 DEGs in RA and 114 DEGs in T2D patients were identified compared with healthy controls, respectively. 32 DEGs were shared between the two comparisons. The top 10 shared pathways interacted in cross-talking networks, regulated by 5 shared predicted upstream regulators, leading to the activated immune response were explored, which was considered as partly of the association mechanism of this two disorders. These discoveries would be considered as new understanding on the associations between RA and T2D, and provide novel treatment or prevention strategy. PMID:26252209

Establishing a culture for patient safety - the role of education.

PubMed

Milligan, Frank J

2007-02-01

This paper argues that the process of making significant moves towards a patient safety culture requires changes in healthcare education. Improvements in patient safety are a shared international priority as too many errors and other forms of unnecessary harm are currently occurring in the process of caring for and treating patients. A description of the patient safety agenda is given followed by a brief analysis of human factors theory and its use in other safety critical industries, most notably aviation. The all too common problem of drug administration errors is used to illustrate the relevance of human factors theory to healthcare education with specific mention made of the Human Factors Analysis and Classification System (HFACS).

Supporting shared decision making beyond consumer-prescriber interactions: Initial development of the CommonGround fidelity scale

PubMed Central

Fukui, Sadaaki; Salyers, Michelle P.; Rapp, Charlie; Goscha, Rick; Young, Leslie; Mabry, Ally

2015-01-01

Shared decision-making has become a central tenet of recovery-oriented, person-centered mental health care, yet the practice is not always transferred to the routine psychiatric visit. Supporting the practice at the system level, beyond the interactions of consumers and medication prescribers, is needed for successful adoption of shared decision-making. CommonGround is a systemic approach, intended to be part of a larger integration of shared decision-making tools and practices at the system level. We discuss the organizational components that CommonGround uses to facilitate shared decision-making, and we present a fidelity scale to assess how well the system is being implemented. PMID:28090194

The concept of shared mental models in healthcare collaboration.

PubMed

McComb, Sara; Simpson, Vicki

2014-07-01

To report an analysis of the concept of shared mental models in health care. Shared mental models have been described as facilitators of effective teamwork. The complexity and criticality of the current healthcare system requires shared mental models to enhance safe and effective patient/client care. Yet, the current concept definition in the healthcare literature is vague and, therefore, difficult to apply consistently in research and practice. Concept analysis. Literature for this concept analysis was retrieved from several databases, including CINAHL, PubMed and MEDLINE (EBSCO Interface), for the years 1997-2013. Walker and Avant's approach to concept analysis was employed and, following Paley's guidance, embedded in extant theory from the team literature. Although teamwork and collaboration are discussed frequently in healthcare literature, the concept of shared mental models in that context is not as commonly found but is increasing in appearance. Our concept analysis defines shared mental models as individually held knowledge structures that help team members function collaboratively in their environments and are comprised of the attributes of content, similarity, accuracy and dynamics. This theoretically grounded concept analysis provides a foundation for a middle-range descriptive theory of shared mental models in nursing and health care. Further research concerning the impact of shared mental models in the healthcare setting can result in development and refinement of shared mental models to support effective teamwork and collaboration. © 2013 John Wiley & Sons Ltd.

Examining age-related shared variance between face cognition, vision, and self-reported physical health: a test of the common cause hypothesis for social cognition

PubMed Central

Olderbak, Sally; Hildebrandt, Andrea; Wilhelm, Oliver

2015-01-01

The shared decline in cognitive abilities, sensory functions (e.g., vision and hearing), and physical health with increasing age is well documented with some research attributing this shared age-related decline to a single common cause (e.g., aging brain). We evaluate the extent to which the common cause hypothesis predicts associations between vision and physical health with social cognition abilities specifically face perception and face memory. Based on a sample of 443 adults (17–88 years old), we test a series of structural equation models, including Multiple Indicator Multiple Cause (MIMIC) models, and estimate the extent to which vision and self-reported physical health are related to face perception and face memory through a common factor, before and after controlling for their fluid cognitive component and the linear effects of age. Results suggest significant shared variance amongst these constructs, with a common factor explaining some, but not all, of the shared age-related variance. Also, we found that the relations of face perception, but not face memory, with vision and physical health could be completely explained by fluid cognition. Overall, results suggest that a single common cause explains most, but not all age-related shared variance with domain specific aging mechanisms evident. PMID:26321998

Towards precision medicine; a new biomedical cosmology.

PubMed

Vegter, M W

2018-02-10

Precision Medicine has become a common label for data-intensive and patient-driven biomedical research. Its intended future is reflected in endeavours such as the Precision Medicine Initiative in the USA. This article addresses the question whether it is possible to discern a new 'medical cosmology' in Precision Medicine, a concept that was developed by Nicholas Jewson to describe comprehensive transformations involving various dimensions of biomedical knowledge and practice, such as vocabularies, the roles of patients and physicians and the conceptualisation of disease. Subsequently, I will elaborate my assessment of the features of Precision Medicine with the help of Michel Foucault, by exploring how precision medicine involves a transformation along three axes: the axis of biomedical knowledge, of biomedical power and of the patient as a self. Patients are encouraged to become the managers of their own health status, while the medical domain is reframed as a data-sharing community, characterised by changing power relationships between providers and patients, producers and consumers. While the emerging Precision Medicine cosmology may surpass existing knowledge frameworks; it obscures previous traditions and reduces research-subjects to mere data. This in turn, means that the individual is both subjected to the neoliberal demand to share personal information, and at the same time has acquired the positive 'right' to become a member of the data-sharing community. The subject has to constantly negotiate the meaning of his or her data, which can either enable self-expression, or function as a commanding Superego.

Do choosing wisely tools meet criteria for patient decision aids? A descriptive analysis of patient materials

PubMed Central

Légaré, France; Hébert, Jessica; Goh, Larissa; Lewis, Krystina B; Leiva Portocarrero, Maria Ester; Robitaille, Hubert; Stacey, Dawn

2016-01-01

Objectives Choosing Wisely is a remarkable physician-led campaign to reduce unnecessary or harmful health services. Some of the literature identifies Choosing Wisely as a shared decision-making approach. We evaluated the patient materials developed by Choosing Wisely Canada to determine whether they meet the criteria for shared decision-making tools known as patient decision aids. Design Descriptive analysis of all Choosing Wisely Canada patient materials. Data source In May 2015, we selected all Choosing Wisely Canada patient materials from its official website. Main outcomes and measures Four team members independently extracted characteristics of the English materials using the International Patient Decision Aid Standards (IPDAS) modified 16-item minimum criteria for qualifying and certifying patient decision aids. The research team discussed discrepancies between data extractors and reached a consensus. Descriptive analysis was conducted. Results Of the 24 patient materials assessed, 12 were about treatments, 11 were about screening and 1 was about prevention. The median score for patient materials using IPDAS criteria was 10/16 (range: 8–11) for screening topics and 6/12 (range: 6–9) for prevention and treatment topics. Commonly missed criteria were stating the decision (21/24 did not), providing balanced information on option benefits/harms (24/24 did not), citing evidence (24/24 did not) and updating policy (24/24 did not). Out of 24 patient materials, only 2 met the 6 IPDAS criteria to qualify as patient decision aids, and neither of these 2 met the 6 certifying criteria. Conclusions Patient materials developed by Choosing Wisely Canada do not meet the IPDAS minimal qualifying or certifying criteria for patient decision aids. Modifications to the Choosing Wisely Canada patient materials would help to ensure that they qualify as patient decision aids and thus as more effective shared decision-making tools. PMID:27566638

Common data items in seven European oesophagogastric cancer surgery registries: towards a European upper GI cancer audit (EURECCA Upper GI).

PubMed

de Steur, W O; Henneman, D; Allum, W H; Dikken, J L; van Sandick, J W; Reynolds, J; Mariette, C; Jensen, L; Johansson, J; Kolodziejczyk, P; Hardwick, R H; van de Velde, C J H

2014-03-01

Seven countries (Denmark, France, Ireland, the Netherlands, Poland, Sweden, United Kingdom) collaborated to initiate a EURECCA (European Registration of Cancer Care) Upper GI project. The aim of this study was to identify a core dataset of shared items in the different data registries which can be used for future collaboration between countries. Item lists from all participating Upper GI cancer registries were collected. Items were scored 'present' when included in the registry, or when the items could be deducted from other items in the registry. The definition of a common item was that it was present in at least six of the seven participating countries. The number of registered items varied between 40 (Poland) and 650 (Ireland). Among the 46 shared items were data on patient characteristics, staging and diagnostics, neoadjuvant treatment, surgery, postoperative course, pathology, and adjuvant treatment. Information on non-surgical treatment was available in only 4 registries. A list of 46 shared items from seven participating Upper GI cancer registries was created, providing a basis for future quality assurance and research in Upper GI cancer treatment on a European level. Copyright © 2013 Elsevier Ltd. All rights reserved.

A study protocol of the effectiveness of PEGASUS: a multi-centred study comparing an intervention to promote shared decision making about breast reconstruction with treatment as usual.

PubMed

Harcourt, Diana; Paraskeva, Nicole; White, Paul; Powell, Jane; Clarke, Alex

2017-10-02

Increasingly, women elect breast reconstruction after mastectomy. However, their expectations of surgery are often not met, and dissatisfaction with outcome and ongoing psychosocial concerns and distress are common. We developed a patient-centered intervention, PEGASUS:(Patients' Expectations and Goals: Assisting Shared Understanding of Surgery) which supports shared decision making by helping women clarify their own, individual goals about reconstruction so that they can discuss these with their surgeon. Our acceptability/feasibility work has shown it is well received by patients and health professionals alike. We now need to establish whether PEGASUS improves patients' experiences of breast reconstruction decision making and outcomes. The purpose of this study is, therefore, to examine the effectiveness of PEGASUS, an intervention designed to support shared decision making about breast reconstruction. A multi-centered sequential study will compare the impact of PEGASUS with usual care, in terms of patient reported outcomes (self-reported satisfaction with the outcome of surgery, involvement in decision making and in the consultation) and health economics. Initially we will collect data from our comparison (usual care) group (90 women) who will complete standardized measures (Breast-Q, EQ5D -5 L and ICECAP- A) at the time of decision making, 3, 6 and 12 months after surgery. Health professionals will then be trained to use PEGASUS, which will be delivered to the intervention group (another 90 women completing the same measures at the time of decision making, and 3, 6 and 12 months after surgery). Health professionals and a purposefully selected sample of participants will be interviewed about whether their expectations of reconstruction were met, and their experiences of PEGASUS (if appropriate). PEGASUS may have the potential to provide health professionals with an easily accessible tool aiming to support shared decision making and improve patients' satisfaction with breast reconstruction. Results of this study will be available at the end of 2019. ISRCTN 18000391 (DOI 10.1186/ISRCTN18000391) 27/01/2016.

Cost-Sharing Rates Increase During Deep Recession: Preliminary Data From Greece.

PubMed

Gouvalas, Athanasios; Igoumenidis, Michael; Theodorou, Mamas; Athanasakis, Kostas

2016-05-28

Measures taken over the past four years in Greece to reduce pharmaceutical expenditure have led to significant price reductions for medicines, but have also changed patient cost-sharing rates for prescription drugs. This study attempts to capture the resulting increase in patients' out-of-pocket (OOP) expenses for prescription drugs during the 2011-2014 period. The authors conducted a retrospective review of financial data derived from 39 883 prescriptions, dispensed at three randomly chosen pharmacies located in Lamia, central Greece. The study recorded an average contribution rate per prescription as follows: 11.28% for 2011 (95% CI: 10.76-11.80), 14.10% for 2012, 19.97% for 2013, and 29.08% for 2014. Correspondingly, the mean patient charge per prescription for 2011 was €6.58 (95% CI: 6.22-6.94), €8.28 for 2012, €8.35 for 2013, and €10.87 for 2014. During the 2011-2014 period, mean percentage rate of patient contribution increased by 157.75%, while average patient charge per prescription in current prices increased by 65.22%. The use of a newly introduced internal reference price (IRP) system increased the level of prescription charge at a rate of 2.41% for 2012 (100% surcharge on patients), 26.24% for 2013 (49.95% on patients and 50.04% on the appropriate health insurance funds), and 47.72% for 2014 (85.06% on patients and 14.94% on funds). Increased cost-sharing rates for prescription drugs can reduce public pharmaceutical expenditure, but international experience shows that rising OOP expenses can compromise patients' ability to pay, particularly when it comes to chronic diseases and vulnerable populations. Various suggestions could be effective in refining the cost-sharing approach by giving greater consideration to chronic patients, and to the poor and elderly. © 2016 The Author(s); Published by Kerman University of Medical Sciences. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Towards Social Radiology as an Information Infrastructure: Reconciling the Local With the Global

PubMed Central

2014-01-01

The current widespread use of medical images and imaging procedures in clinical practice and patient diagnosis has brought about an increase in the demand for sharing medical imaging studies among health professionals in an easy and effective manner. This article reveals the existence of a polarization between the local and global demands for radiology practice. While there are no major barriers for sharing such studies, when access is made from a (local) picture archive and communication system (PACS) within the domain of a healthcare organization, there are a number of impediments for sharing studies among health professionals on a global scale. Social radiology as an information infrastructure involves the notion of a shared infrastructure as a public good, affording a social space where people, organizations and technical components may spontaneously form associations in order to share clinical information linked to patient care and radiology practice. This article shows however, that such polarization establishes a tension between local and global demands, which hinders the emergence of social radiology as an information infrastructure. Based on an analysis of the social space for radiology practice, the present article has observed that this tension persists due to the inertia of a locally installed base in radiology departments, for which common teleradiology models are not truly capable of reorganizing as a global social space for radiology practice. Reconciling the local with the global signifies integrating PACS and teleradiology into an evolving, secure, heterogeneous, shared, open information infrastructure where the conceptual boundaries between (local) PACS and (global) teleradiology are transparent, signaling the emergence of social radiology as an information infrastructure. PMID:25600710

Behçet Disease serum is immunoreactive to neurofilament medium which share common epitopes to bacterial HSP-65, a putative trigger.

PubMed

Lule, S; Colpak, A I; Balci-Peynircioglu, B; Gursoy-Ozdemir, Y; Peker, S; Kalyoncu, U; Can, A; Tekin, N; Demiralp, D; Dalkara, T

2017-11-01

Autoimmune and dysimmune inflammatory mechanisms on a genetically susceptible background are implicated in the etiology of Behçet's Disease (BD). Heat-shock protein-65 (HSP-65) derived from Streptococcus sanguinis was proposed as a triggering factor based on its homology with human HSP-60. However, none of the autoantigens identified so far in sera from BD share common epitopes with bacterial HSP-65 or has a high prevalence. Here, we report that sera from BD patients are immunoreactive against filamentous neuronal processes in the mouse brain, retina and scrotal skin in great majority of patients. By using matrix-assisted laser desorption/ionization-time of flight mass spectrometry (MALDI-TOF MS) and peptide mass fingerprinting, Western blotting and peptide blocking experiments, we have identified neurofilament medium (NF-M) as the probable antigen for the serologic response observed. Clustal Omega analyses detected significant structural homology between the human NF-M and bacterial HSP-65 corresponding to amino acids 111-126, 213-232 and 304-363 of mycobacterial HSP-65, which were previously identified to induce proliferation of lymphocytes obtained from BD patients. We also found that sera immunoreactive against NF-M cross-reacted with bacterial HSP-65. These findings suggest that NF-M may be involved in autoimmunity in BD due to its molecular mimicry with bacterial HSP-65. Copyright © 2017 Elsevier Ltd. All rights reserved.

Simple group password-based authenticated key agreements for the integrated EPR information system.

PubMed

Lee, Tian-Fu; Chang, I-Pin; Wang, Ching-Cheng

2013-04-01

The security and privacy are important issues for electronic patient records (EPRs). The goal of EPRs is sharing the patients' medical histories such as the diagnosis records, reports and diagnosis image files among hospitals by the Internet. So the security issue for the integrated EPR information system is essential. That is, to ensure the information during transmission through by the Internet is secure and private. The group password-based authenticated key agreement (GPAKE) allows a group of users like doctors, nurses and patients to establish a common session key by using password authentication. Then the group of users can securely communicate by using this session key. Many approaches about GAPKE employ the public key infrastructure (PKI) in order to have higher security. However, it not only increases users' overheads and requires keeping an extra equipment for storing long-term secret keys, but also requires maintaining the public key system. This investigation presents a simple group password-based authenticated key agreement (SGPAKE) protocol for the integrated EPR information system. The proposed SGPAKE protocol does not require using the server or users' public keys. Each user only remembers his weak password shared with a trusted server, and then can obtain a common session key. Then all users can securely communicate by using this session key. The proposed SGPAKE protocol not only provides users with convince, but also has higher security.

Shared and unique common genetic determinants between pediatric and adult celiac disease.

PubMed

Senapati, Sabyasachi; Sood, Ajit; Midha, Vandana; Sood, Neena; Sharma, Suresh; Kumar, Lalit; Thelma, B K

2016-07-22

Based on age of presentation, celiac disease (CD) is categorised as pediatric CD and adult CD. It however remains unclear if these are genetically and/or phenotypically distinct disorders or just different spectrum of the same disease. We therefore explored the common genetic components underlying pediatric and adult CD in a well characterized north Indian cohort. A retrospective analysis of children (n = 531) and adult (n = 871) patients with CD between January 2001 and December 2010 was done. The database included basic demographic characteristics, clinical presentations, associated diseases and complications, if any. The genotype dataset was acquired for children (n = 217) and adult CD patients (n = 340) and controls (n = 736) using Immunochip. Association analysis was performed using logistic regression model to identify susceptibility genetic variants. The predominant form of CD was classical CD in both pediatric and adult CD groups. There was remarkable similarity between pediatric and adult CD except for quantitative differences between the two groups such as female preponderance, non-classical presentation, co-occurrence of other autoimmune diseases being more common amongst adult CD. Notably, same HLA-DQ2 and -DQ8 haplotypes were established as the major risk factors in both types of CD. In addition, a few suggestively associated (p < 5 × 10(-4)) non-HLA markers were identified of which only ANK3 (rs4948256-A; rs10994257-T) was found to be shared and explain risk for ~45 % of CD patients with HLA allele. Overall phenotypic similarity between pediatric and adult CD groups can be explained by contribution of same HLA risk alleles. Different non-HLA genes/loci with minor risk seem to play crucial role in disease onset and extra intestinal manifestation of CD. None of the non-HLA risk variants reached genome-wide significance, however most of them were shown to have functional implication to disease pathogenesis. Functional relevance of our findings needs to be investigated to address clinical heterogeneity of CD. This present study is the first comparative study based on common genetic markers to suggest that CD in pediatric age group and in adults are the spectrum of the same disease with novel and shared genetic risk determinants. Follow-up fine mapping studies with larger study cohorts are warranted for further genetic investigation.

Mutual influence in shared decision making: a collaborative study of patients and physicians.

PubMed

Lown, Beth A; Clark, William D; Hanson, Janice L

2009-06-01

To explore how patients and physicians describe attitudes and behaviours that facilitate shared decision making. Background Studies have described physician behaviours in shared decision making, explored decision aids for informing patients and queried whether patients and physicians want to share decisions. Little attention has been paid to patients' behaviors that facilitate shared decision making or to the influence of patients and physicians on each other during this process. Qualitative analysis of data from four research work groups, each composed of patients with chronic conditions and primary care physicians. Eighty-five patients and physicians identified six categories of paired physician/patient themes, including act in a relational way; explore/express patient's feelings and preferences; discuss information and options; seek information, support and advice; share control and negotiate a decision; and patients act on their own behalf and physicians act on behalf of the patient. Similar attitudes and behaviours were described for both patients and physicians. Participants described a dynamic process in which patients and physicians influence each other throughout shared decision making. This study is unique in that clinicians and patients collaboratively defined and described attitudes and behaviours that facilitate shared decision making and expand previous descriptions, particularly of patient attitudes and behaviours that facilitate shared decision making. Study participants described relational, contextual and affective behaviours and attitudes for both patients and physicians, and explicitly discussed sharing control and negotiation. The complementary, interactive behaviours described in the themes for both patients and physicians illustrate mutual influence of patients and physicians on each other.

Anonymity versus privacy: selective information sharing in online cancer communities.

PubMed

Frost, Jeana; Vermeulen, Ivar E; Beekers, Nienke

2014-05-14

Active sharing in online cancer communities benefits patients. However, many patients refrain from sharing health information online due to privacy concerns. Existing research on privacy emphasizes data security and confidentiality, largely focusing on electronic medical records. Patient preferences around information sharing in online communities remain poorly understood. Consistent with the privacy calculus perspective adopted from e-commerce research, we suggest that patients approach online information sharing instrumentally, weighing privacy costs against participation benefits when deciding whether to share certain information. Consequently, we argue that patients prefer sharing clinical information over daily life and identity information that potentially compromises anonymity. Furthermore, we explore whether patients' prior experiences, age, health, and gender affect perceived privacy costs and thus willingness to share information. The goal of the present study is to document patient preferences for sharing information within online health platforms. A total of 115 cancer patients reported sharing intentions for 15 different types of information, demographics, health status, prior privacy experiences, expected community utility, and privacy concerns. Factor analysis on the 15 information types revealed 3 factors coinciding with 3 proposed information categories: clinical, daily life, and identity information. A within-subject ANOVA showed a strong preference for sharing clinical information compared to daily life and identity information (F1,114=135.59, P=.001, η(2)=.93). Also, adverse online privacy experiences, age, and health status negatively affected information-sharing intentions. Female patients shared information less willingly. Respondents' information-sharing intentions depend on dispositional and situational factors. Patients share medical details more willingly than daily life or identity information. The results suggest the need to focus on anonymity rather than privacy in online communities.

Discordant Genotypic Sex and Phenotype Variations in Two Spanish Siblings with 17α-Hydroxylase/17,20-Lyase Deficiency Carrying the Most Prevalent Mutated CYP17A1 Alleles of Brazilian Patients.

PubMed

Fernández-Cancio, Mónica; García-García, Emilio; González-Cejudo, Carmen; Martínez-Maestre, María-Angeles; Mangas-Cruz, Miguel-Angel; Guerra-Junior, Gil; Pandi de Mello, Maricilda; Arnhold, Ivo J P; Nishi, Mirian Y; Bilharinho Mendonça, Berenice; García-Arumí, Elena; Audí, Laura; Tizzano, Eduardo; Carrascosa, Antonio

2017-01-01

17α-hydroxylase/17,20-lyase deficiency is a rare form of congenital adrenal hyperplasia caused by mutations in CYP17A1. Two phenotypic female sisters, aged 17 and 15 years and with 46,XY and 46,XX karyotypes, respectively, presented with primary amenorrhea and absent secondary sexual characteristics. The elder sib also presented with high blood pressure. Both patients had elevated levels of ACTH, gonadotropins, progesterone, corticosterone, and deoxycorticosterone, and reduced levels of estradiol, testosterone, androstenedione, 17-OH-P, DHEA-S, cortisol, aldosterone, and renin activity. The CYP17A1 gene was sequenced, and polymorphic haplotypes were further analyzed in the Spanish family and in Brazilian patients. The 2 sisters were compound heterozygous for p.Arg362Cys and p.Trp406Arg mutations, previously described as the most prevalent mutations in Brazilian families of Spanish (p.Trp406Arg) or Portuguese (p.Arg362Cys) origin. Analysis of polymorphisms in CYP17A1 suggested that the paternal allele with p.Arg362Cys may share a common origin with the Brazilian carriers, while the maternal allele with p.Trp406Arg did not. Hydrocortisone and sex hormone replacement therapy was initiated in both patients. In conclusion, one CYP17A1 mutation (p.Arg362Cys) may share a common ancestry in Brazilian and our present Spanish patients, while p.Trp406Arg may have arisen separately. The elder patient (46,XY) developed a more severe phenotype and a poorer response to estradiol replacement therapy. © 2017 S. Karger AG, Basel.

A national common massive transfusion protocol (MTP) is a feasible and advantageous option for centralized blood services and hospitals.

PubMed

Chay, J; Koh, M; Tan, H H; Ng, J; Ng, H J; Chia, N; Kuperan, P; Tan, J; Lew, E; Tan, L K; Koh, P L; Desouza, K A; Bin Mohd Fathil, S; Kyaw, P M; Ang, A L

2016-01-01

A common national MTP was jointly implemented in 2011 by the national blood service (Blood Services Group) and seven participating acute hospitals to provide rapid access to transfusion support for massively haemorrhaging patients treated in all acute care hospitals. Through a systematic clinical workflow, blood components are transfused in a ratio of 1:1:1 (pRBC: whole blood-derived platelets: FFP), together with cryoprecipitate for fibrinogen replacement. The composition of components for the MTP is fixed, although operational aspects of the MTP can be adapted by individual hospitals to suit local hospital workflow. The MTP could be activated in support of any patient with critical bleeding and at risk of massive transfusion, including trauma and non-trauma general medical, surgical and obstetric patients. There were 434 activations of the MTP from October 2011 to October 2013. Thirty-nine per cent were for trauma patients, and 30% were for surgical patients with heavy intra-operative bleeding, with 25% and 6% for patients with gastrointestinal bleeding and peri-partum haemorrhage, respectively. Several hospitals reported reduction in mean time between request and arrival of blood. Mean transfusion ratio achieved was one red cell unit: 0·8 FFP units: 0·8 whole blood-derived platelet units: 0·4 units of cryoprecipitate. Although cryoprecipitate usage more than doubled after introduction of MTP, there was no significant rise in overall red cells, platelet and FFP usage following implementation. This successful collaboration shows that shared transfusion protocols are feasible and potentially advantageous for hospitals sharing a central blood provider. © 2015 International Society of Blood Transfusion.

Using memories to understand others: the role of episodic memory in theory of mind impairment in Alzheimer disease.

PubMed

Moreau, Noémie; Viallet, François; Champagne-Lavau, Maud

2013-09-01

Theory of mind (TOM) refers to the ability to infer one's own and other's mental states. Growing evidence highlighted the presence of impairment on the most complex TOM tasks in Alzheimer disease (AD). However, how TOM deficit is related to other cognitive dysfunctions and more specifically to episodic memory impairment - the prominent feature of this disease - is still under debate. Recent neuroanatomical findings have shown that remembering past events and inferring others' states of mind share the same cerebral network suggesting the two abilities share a common process .This paper proposes to review emergent evidence of TOM impairment in AD patients and to discuss the evidence of a relationship between TOM and episodic memory. We will discuss about AD patients' deficit in TOM being possibly related to their difficulties in recollecting memories of past social interactions. Copyright © 2013 Elsevier B.V. All rights reserved.

Medical homes: challenges in translating theory into practice.

PubMed

Carrier, Emily; Gourevitch, Marc N; Shah, Nirav R

2009-07-01

The concept of the medical home has existed since the 1960s, but has recently become a focus for discussion and innovation in the health care system. The most prominent definitions of the medical home are those presented by the Patient-Centered Primary Care Collaborative, the National Committee for Quality Assurance, and the Commonwealth Fund. These definitions share: adoption of health information technology and decision support systems, modification of clinical practice patterns, and ensuring continuity of care. Each of these components is a complex undertaking, and there is scant evidence to guide assessment of diverse strategies for achieving their integration into a medical home. Without a shared vocabulary and common definitions, policy-makers seeking to encourage the development of medical homes, providers seeking to improve patient care, and payers seeking to develop appropriate systems of reimbursement will face challenges in evaluating and disseminating the medical home model.

Is periodontitis a comorbidity of COPD or can associations be explained by shared risk factors/behaviors?

PubMed Central

Hobbins, Stephanie; Chapple, Iain LC; Sapey, Elizabeth; Stockley, Robert A

2017-01-01

COPD is recognized as having a series of comorbidities potentially related to common inflammatory processes. Periodontitis is one of the most common human inflammatory diseases and has previously been associated with COPD in numerous observational studies. As periodontitis and COPD are both chronic, progressive conditions characterized by neutrophilic inflammation with subsequent proteolytic destruction of connective tissue, it has been proposed that they share common pathophysiological processes. The mechanisms proposed to link COPD and periodontitis include mechanical aspiration of oral contents into the respiratory tree, overspill of locally produced inflammatory mediators into the systemic circulation or oral or lung-derived bacteremia activating an acute-phase response and also reactive oxygen species (ROS) and cytokine release by systemic neutrophils at distant sites. Studies of systemic neutrophils in COPD and chronic periodontitis describe altered cellular functions that would predispose to inflammation and tissue destruction both in the lung and in the mouth, again potentially connecting these conditions. However, COPD and periodontitis also share risk factors such as age, chronic tobacco smoke exposure, and social deprivation that are not always considered in observational and interventional studies. Furthermore, studies reporting associations have often utilized differing definitions of both COPD and periodontitis. This article reviews the current available evidence supporting the hypothesis that COPD and inflammatory periodontal disease (periodontitis) could be pathologically associated, including a review of shared inflammatory mechanisms. It highlights the potential limitations of previous studies, in particular, the lack of uniformly applied case definitions for both COPD and periodontitis and poor recognition of shared risk factors. Understanding associations between these conditions may inform why patients with COPD suffer such a burden of comorbid illness and new therapeutic strategies for both the diseases. However, further research is needed to clarify factors that may be directly causal as opposed to confounding relationships. PMID:28496317

Is periodontitis a comorbidity of COPD or can associations be explained by shared risk factors/behaviors?

PubMed

Hobbins, Stephanie; Chapple, Iain Lc; Sapey, Elizabeth; Stockley, Robert A

2017-01-01

COPD is recognized as having a series of comorbidities potentially related to common inflammatory processes. Periodontitis is one of the most common human inflammatory diseases and has previously been associated with COPD in numerous observational studies. As periodontitis and COPD are both chronic, progressive conditions characterized by neutrophilic inflammation with subsequent proteolytic destruction of connective tissue, it has been proposed that they share common pathophysiological processes. The mechanisms proposed to link COPD and periodontitis include mechanical aspiration of oral contents into the respiratory tree, overspill of locally produced inflammatory mediators into the systemic circulation or oral or lung-derived bacteremia activating an acute-phase response and also reactive oxygen species (ROS) and cytokine release by systemic neutrophils at distant sites. Studies of systemic neutrophils in COPD and chronic periodontitis describe altered cellular functions that would predispose to inflammation and tissue destruction both in the lung and in the mouth, again potentially connecting these conditions. However, COPD and periodontitis also share risk factors such as age, chronic tobacco smoke exposure, and social deprivation that are not always considered in observational and interventional studies. Furthermore, studies reporting associations have often utilized differing definitions of both COPD and periodontitis. This article reviews the current available evidence supporting the hypothesis that COPD and inflammatory periodontal disease (periodontitis) could be pathologically associated, including a review of shared inflammatory mechanisms. It highlights the potential limitations of previous studies, in particular, the lack of uniformly applied case definitions for both COPD and periodontitis and poor recognition of shared risk factors. Understanding associations between these conditions may inform why patients with COPD suffer such a burden of comorbid illness and new therapeutic strategies for both the diseases. However, further research is needed to clarify factors that may be directly causal as opposed to confounding relationships.

Twelve myths about shared decision making.

PubMed

Légaré, France; Thompson-Leduc, Philippe

2014-09-01

As shared decision makes increasing headway in healthcare policy, it is under more scrutiny. We sought to identify and dispel the most prevalent myths about shared decision making. In 20 years in the shared decision making field one of the author has repeatedly heard mention of the same barriers to scaling up shared decision making across the healthcare spectrum. We conducted a selective literature review relating to shared decision making to further investigate these commonly perceived barriers and to seek evidence supporting their existence or not. Beliefs about barriers to scaling up shared decision making represent a wide range of historical, cultural, financial and scientific concerns. We found little evidence to support twelve of the most common beliefs about barriers to scaling up shared decision making, and indeed found evidence to the contrary. Our selective review of the literature suggests that twelve of the most commonly perceived barriers to scaling up shared decision making across the healthcare spectrum should be termed myths as they can be dispelled by evidence. Our review confirms that the current debate about shared decision making must not deter policy makers and clinicians from pursuing its scaling up across the healthcare continuum. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

The Experience of Older People in the Shared Decision-Making Process in Advanced Kidney Care.

PubMed

Thomas, Nicola; Jenkins, Karen; McManus, Breeda; Gracey, Brian

2016-01-01

Introduction . This qualitative descriptive study was designed to understand the experiences of older people (>70 years) when making a decision about renal replacement therapy. This was a coproduced study, whereby patients and carers were involved in all aspects of the research process. Methods . A Patient and Carer Group undertook volunteer and research training. The group developed the interview questions and interviewed 29 people who had commenced dialysis or made a decision not to have dialysis. Interview data were transcribed and analysed, and common themes were identified. Results . 22 men and 7 women (mean age 77.4 yrs) from two hospitals were interviewed. 18 had chosen haemodialysis, 6 peritoneal dialysis, and 5 supportive care. The majority of patients were involved in the dialysis decision. Most were satisfied with the amount of information that they received, although some identified that the quality of the information could be improved, especially how daily living can be affected by dialysis. Conclusion . Our findings show that overall older patients were involved in the dialysis decision along with their families. Our approach is innovative because it is the first time that patients and carers have been involved in a coproduced study about shared decision-making.

Grouping and binding in visual short-term memory.

PubMed

Quinlan, Philip T; Cohen, Dale J

2012-09-01

Findings of 2 experiments are reported that challenge the current understanding of visual short-term memory (VSTM). In both experiments, a single study display, containing 6 colored shapes, was presented briefly and then probed with a single colored shape. At stake is how VSTM retains a record of different objects that share common features: In the 1st experiment, 2 study items sometimes shared a common feature (either a shape or a color). The data revealed a color sharing effect, in which memory was much better for items that shared a common color than for items that did not. The 2nd experiment showed that the size of the color sharing effect depended on whether a single pair of items shared a common color or whether 2 pairs of items were so defined-memory for all items improved when 2 color groups were presented. In explaining performance, an account is advanced in which items compete for a fixed number of slots, but then memory recall for any given stored item is prone to error. A critical assumption is that items that share a common color are stored together in a slot as a chunk. The evidence provides further support for the idea that principles of perceptual organization may determine the manner in which items are stored in VSTM. PsycINFO Database Record (c) 2012 APA, all rights reserved.

Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities

PubMed Central

Vermeulen, Ivar E; Beekers, Nienke

2014-01-01

Background Active sharing in online cancer communities benefits patients. However, many patients refrain from sharing health information online due to privacy concerns. Existing research on privacy emphasizes data security and confidentiality, largely focusing on electronic medical records. Patient preferences around information sharing in online communities remain poorly understood. Consistent with the privacy calculus perspective adopted from e-commerce research, we suggest that patients approach online information sharing instrumentally, weighing privacy costs against participation benefits when deciding whether to share certain information. Consequently, we argue that patients prefer sharing clinical information over daily life and identity information that potentially compromises anonymity. Furthermore, we explore whether patients’ prior experiences, age, health, and gender affect perceived privacy costs and thus willingness to share information. Objective The goal of the present study is to document patient preferences for sharing information within online health platforms. Methods A total of 115 cancer patients reported sharing intentions for 15 different types of information, demographics, health status, prior privacy experiences, expected community utility, and privacy concerns. Results Factor analysis on the 15 information types revealed 3 factors coinciding with 3 proposed information categories: clinical, daily life, and identity information. A within-subject ANOVA showed a strong preference for sharing clinical information compared to daily life and identity information (F 1,114=135.59, P=.001, η2=.93). Also, adverse online privacy experiences, age, and health status negatively affected information-sharing intentions. Female patients shared information less willingly. Conclusions Respondents’ information-sharing intentions depend on dispositional and situational factors. Patients share medical details more willingly than daily life or identity information. The results suggest the need to focus on anonymity rather than privacy in online communities. PMID:24828114

Shared Decision-Making in the Management of Congenital Vascular Malformations.

PubMed

Horbach, Sophie E R; Ubbink, Dirk T; Stubenrouch, Fabienne E; Koelemay, Mark J W; van der Vleuten, Carine J M; Verhoeven, Bas H; Reekers, Jim A; Schultze Kool, Leo J; van der Horst, Chantal M A M

2017-03-01

In shared decision-making, clinicians and patients arrive at a joint treatment decision, by incorporating best available evidence and the patients' personal values and preferences. Little is known about the role of shared decision-making in managing patients with congenital vascular malformations, for which preference-sensitive decision-making seems obvious. The authors investigated preferences regarding decision-making and current shared decision-making behavior during physician-patient encounters. In two Dutch university hospitals, adults and children with congenital vascular malformations facing a treatment-related decision were enrolled. Before the consultation, patients (or parents of children) expressed their preference regarding decision-making (Control Preferences Scale). Afterward, participants completed shared decision-making-specific questionnaires (nine-item Shared Decision-Making Questionnaire, CollaboRATE, and satisfaction), and physicians completed the Shared Decision-Making Questionnaire-Physician questionnaire. Consultations were audiotaped and patient involvement was scored by two independent researchers using the five-item Observing Patient Involvement instrument. All questionnaire results were expressed on a scale of 0 to 100 (optimum shared decision-making). Fifty-five participants (24 parents and 31 adult patients) were included. Two-thirds preferred the shared decision-making approach (Control Preferences Scale). Objective five-item Observing Patient Involvement scores were low (mean ± SD, 31 ± 15), whereas patient and physician Shared Decision-Making Questionnaire scores were high, with means of 68 ± 18 and 68 ± 19, respectively. The median CollaboRATE score was 93. There was no clear relationship between shared decision-making and satisfaction scores. Although adults and parents of children with vascular malformations express a strong desire for shared decision-making, objective shared decision-making behavior is still lacking, most likely because of poor awareness of the shared decision-making concept among patients, parents, and physicians. To improve shared decision-making practice, targeted interventions (e.g., decision aids, staff training) are essential.

Patients' understanding of shared decision making in a mental health setting.

PubMed

Eliacin, Johanne; Salyers, Michelle P; Kukla, Marina; Matthias, Marianne S

2015-05-01

Shared decision making is a fundamental component of patient-centered care and has been linked to positive health outcomes. Increasingly, researchers are turning their attention to shared decision making in mental health; however, few studies have explored decision making in these settings from patients' perspectives. We examined patients' accounts and understanding of shared decision making. We analyzed interviews from 54 veterans receiving outpatient mental health care at a Department of Veterans Affairs Medical Center in the United States. Although patients' understanding of shared decision making was consistent with accounts published in the literature, participants reported that shared decision making goes well beyond these components. They identified the patient-provider relationship as the bedrock of shared decision making and highlighted several factors that interfere with shared decision making. Our findings highlight the importance of the patient-provider relationship as a fundamental element of shared decision making and point to areas for potential improvement. © The Author(s) 2014.

Military Health System: Sustained Senior Leadership Needed to Fully Develop Plans for Achieving Cost Savings

DTIC Science & Technology

2014-02-26

left its existing structure in place, approving instead a shared - services directorate to consolidate common MHS functions (e.g., shared information...has seven main goals: (1) consolidate functions ( shared services ) common to DoD, (2) deliver more-integrated health care in areas with more than one

Association of Common Mitochondrial DNA Variants with Multiple Sclerosis and Systemic Lupus Erythematosus

PubMed Central

Vyshkina, Tamara; Sylvester, Andrew; Sadiq, Saud; Bonilla, Eduardo; Canter, Jeff A.; Perl, Andras; Kalman, Bernadette

2008-01-01

Mitochondrial dysfunction has been implicated in the pathogenesis of multiple sclerosis (MS) and systemic lupus erythematosus (SLE). This study re-investigates the roles of previously suggested candidate genes of energy metabolism (Complex I genes located in the nucleus and in the mitochondria) in patients with MS relative to ethnically matched SLE patients and healthy controls. After stringent correction for multiple testing, we reproduce the association of the mitochondrial (mt)DNA haplotype K* with MS, but reject the importance of previously suggested borderline associations with nuclear genes of Complex I. In addition, we detect the association of common variants of the mitochondrial ND2 and ATP6 genes with both MS and SLE, which raises the possibility of a shared mitochondrial genetic background of these two autoimmune diseases. PMID:18708297

Comparison of the sagittal sinus cross-sectional area between patients with multiple sclerosis, hydrocephalus, intracranial hypertension and spontaneous intracranial hypotension: a surrogate marker of venous transmural pressure?

PubMed

Bateman, Grant A; Lechner-Scott, Jeannette; Copping, Ross; Moeskops, Christopher; Yap, Swee Leong

2017-07-06

There is evidence that patients with multiple sclerosis (MS) and hydrocephalus share some common pathophysiological mechanisms. Alterations in CSF pressure are known to affect cerebral venous sinus geometry. To further explore these mechanisms, we measured the superior sagittal sinus (SSS) cross-sectional area 3 cm above the torcular using T2 images in 20 MS, 10 spontaneous intracranial hypotension (SIH), 21 hydrocephalus and 20 idiopathic intracranial hypertension (IIH) patients and compared with 20 matched controls. The SSS area was reduced by 25% in hydrocephalus (p = 0.0008), increased by 22% (p = 0.037) in SIH and unchanged in IIH compared to matched controls. In MS there was a 16% increase in SSS area (p = 0.01).The findings suggest that changes in SSS cross-sectional are common between MS and SIH patients, while in hydrocephalus and IIH these are different.

The Use of Team-Building Activities to Build a Better Resident.

PubMed

Ireland, James D; Deloney, Linda A; Renfroe, Shyann; Jambhekar, Kedar

We implemented team building activities to build a better resident during our orientation process and we have refined the choice of activities each year since. Resident satisfaction with their team building actives provided feedback to improve the following years' experience. While there is no definite way to demonstrate the effectiveness of our team building initiative, our expectation is it will improve the residency experience and work environment, and ultimately, result in better patient care. We focus on five aspects of team building - personal history sharing, creativity and imagination, common bonds, cooperation, and shared experience. The purpose of this paper is to recommend activities in each of these areas based on our experience. Published by Elsevier Inc.

Physics-based interactive volume manipulation for sharing surgical process.

PubMed

Nakao, Megumi; Minato, Kotaro

2010-05-01

This paper presents a new set of techniques by which surgeons can interactively manipulate patient-specific volumetric models for sharing surgical process. To handle physical interaction between the surgical tools and organs, we propose a simple surface-constraint-based manipulation algorithm to consistently simulate common surgical manipulations such as grasping, holding and retraction. Our computation model is capable of simulating soft-tissue deformation and incision in real time. We also present visualization techniques in order to rapidly visualize time-varying, volumetric information on the deformed image. This paper demonstrates the success of the proposed methods in enabling the simulation of surgical processes, and the ways in which this simulation facilitates preoperative planning and rehearsal.

Technology-mediated information sharing between patients and clinicians in primary care encounters.

PubMed

Asan, Onur; Montague, Enid

The aim of this study was to identify and describe the use of electronic health records for information sharing between patients and clinicians in primary care encounters. This topic is particularly important as computers and other technologies are increasingly implemented in multi-user health care settings where interactions and communication between patients and clinicians are integral to interpersonal and organizational outcomes. An ethnographic approach was used to classify the encounters into distinct technology-use patterns based on clinicians` interactions with the technology and patients. Each technology-use pattern was quantitatively analysed to assist with comparison. Quantitative analysis was based on duration of patient and clinician gaze at EHR. Physicians employed three different styles to share information using EHRs: Active information-sharing, in which a clinician turns the monitor towards the patient and uses the computer to actively share information with the patient;Passive information-sharing, when a clinician does not move the monitor, but the patient might see the monitor by leaning in if they choose; andTechnology withdrawal, when a clinician does not share the monitor with the patient. A variety of technology-mediated information-sharing styles may be effective in providing patient-centred care. New EHR designs may be needed to facilitate information sharing between patients and clinicians.

Vibrio chromosomes share common history.

PubMed

Kirkup, Benjamin C; Chang, LeeAnn; Chang, Sarah; Gevers, Dirk; Polz, Martin F

2010-05-10

While most gamma proteobacteria have a single circular chromosome, Vibrionales have two circular chromosomes. Horizontal gene transfer is common among Vibrios, and in light of this genetic mobility, it is an open question to what extent the two chromosomes themselves share a common history since their formation. Single copy genes from each chromosome (142 genes from chromosome I and 42 genes from chromosome II) were identified from 19 sequenced Vibrionales genomes and their phylogenetic comparison suggests consistent phylogenies for each chromosome. Additionally, study of the gene organization and phylogeny of the respective origins of replication confirmed the shared history. Thus, while elements within the chromosomes may have experienced significant genetic mobility, the backbones share a common history. This allows conclusions based on multilocus sequence analysis (MLSA) for one chromosome to be applied equally to both chromosomes.

Multimorbidity and healthcare utilisation among high-cost patients in the US Veterans Affairs Health Care System

PubMed Central

Zulman, Donna M; Pal Chee, Christine; Wagner, Todd H; Yoon, Jean; Cohen, Danielle M; Holmes, Tyson H; Ritchie, Christine; Asch, Steven M

2015-01-01

Objectives To investigate the relationship between multimorbidity and healthcare utilisation patterns among the highest cost patients in a large, integrated healthcare system. Design In this retrospective cross-sectional study of all patients in the U.S. Veterans Affairs (VA) Health Care System, we aggregated costs of individuals’ outpatient and inpatient care, pharmacy services and VA-sponsored contract care received in 2010. We assessed chronic condition prevalence, multimorbidity as measured by comorbidity count, and multisystem multimorbidity (number of body systems affected by chronic conditions) among the 5% highest cost patients. Using multivariate regression, we examined the association between multimorbidity and healthcare utilisation and costs, adjusting for age, sex, race/ethnicity, marital status, homelessness and health insurance status. Setting USA VA Health Care System. Participants 5.2 million VA patients. Measures Annual total costs; absolute and share of costs generated through outpatient, inpatient, pharmacy and VA-sponsored contract care; number of visits to primary, specialty and mental healthcare; number of emergency department visits and hospitalisations. Results The 5% highest cost patients (n=261 699) accounted for 47% of total VA costs. Approximately two-thirds of these patients had chronic conditions affecting ≥3 body systems. Patients with cancer and schizophrenia were less likely to have documented comorbid conditions than other high-cost patients. Multimorbidity was generally associated with greater outpatient and inpatient utilisation. However, increased multisystem multimorbidity was associated with a higher outpatient share of total costs (1.6 percentage points per affected body system, p<0.01) but a lower inpatient share of total costs (−0.6 percentage points per affected body system, p<0.01). Conclusions Multisystem multimorbidity is common among high-cost VA patients. While some patients might benefit from disease-specific programmes, for most patients with multimorbidity there is a need for interventions that coordinate and maximise efficiency of outpatient services across multiple conditions. PMID:25882486

Stillbirth and stigma: the spoiling and repair of multiple social identities.

PubMed

Brierley-Jones, Lyn; Crawley, Rosalind; Lomax, Samantha; Ayers, Susan

This study investigated mothers' experiences surrounding stillbirth in the United Kingdom, their memory making and sharing opportunities, and the effect these opportunities had on them. Qualitative data were generated from free text responses to open-ended questions. Thematic content analysis revealed that "stigma" was experienced by most women and Goffman's (1963) work on stigma was subsequently used as an analytical framework. Results suggest that stillbirth can spoil the identities of "patient," "mother," and "full citizen." Stigma was reported as arising from interactions with professionals, family, friends, work colleagues, and even casual acquaintances. Stillbirth produces common learning experiences often requiring "identity work" (Murphy, 2012). Memory making and sharing may be important in this work and further research is needed. Stigma can reduce the memory sharing opportunities for women after stillbirth and this may explain some of the differential mental health effects of memory making after stillbirth that is documented in the literature.

Brugada Syndrome in a Patient with Vascular Ehlers-Danlos Syndrome: Sudden Death Risk Amplified.

PubMed

D'Souza, Jason; Malhotra, Divyanshu; Goud, Aditya; Dahagam, Chanukya; Everett, George

2017-04-19

The vast majority of sudden cardiac arrests occur in patients with structural heart disease and in approximately 10% of the cases, it can occur in those with structurally normal hearts. Brugada syndrome is an autosomal dominant sodium channelopathy that has been implicated in sudden deaths. Given their low prevalence, our knowledge about Brugada syndrome is still evolving. Apart from schizophrenia, there have been no reports of associated medical conditions. We recently encountered a patient with vascular Ehlers-Danlos syndrome who was also found to have Brugada syndrome. Both these conditions share some common clinical presentations including a propensity for sudden death.

What are the learning outcomes of a short postgraduate training course in dermatology for primary care doctors?

PubMed Central

2011-01-01

Background There are increasing expectations on primary care doctors to shoulder a bigger share of care for patients with common dermatological problems in the community. This study examined the learning outcomes of a short postgraduate course in dermatology for primary care doctors. Methods A self-reported questionnaire developed by the research team was sent to the Course graduates. A retrospective design was adopted to compare their clinical practice characteristics before and after the Course. Differences in the ratings were analysed using the nonparametric Wilcoxon signed rank test to evaluate the effectiveness of the Course in various aspects. Results Sixty-nine graduates replied with a response rate of 42.9% (69/161). Most were confident of diagnosing (91.2%) and managing (88.4%) common dermatological problems after the Course, compared to 61.8% and 58.0% respectively before the Course. Most had also modified their approach and increased their attention to patients with dermatological problems. The number of patients with dermatological problems seen by the graduates per day showed significant increase after the Course, while the average percentage of referrals to dermatologists dropped from 31.9% to 23.5%. The proportion of graduates interested in following up patients with chronic dermatological problems increased from 60.3% to 77.9%. Conclusions Graduates of the Course reported improved confidence, attitudes and skills in treating common dermatological problems. They also reported to handle more patients with common dermatological problems in their practice and refer fewer patients. PMID:21575191

Completing the third person's perspective on patients' involvement in medical decision-making: approaching the full picture.

PubMed

Kasper, Jürgen; Hoffmann, Frauke; Heesen, Christoph; Köpke, Sascha; Geiger, Friedemann

2012-01-01

Shared decision making is based on the idea of cooperation and partnership between patients and doctors. In this concept both parties may initiate and perform specific decision-making steps. However, the common observation-based instruments focus solely on doctors' behaviour. Content and quality of information provided to involve patients in medical decisions are hardly considered in evaluation of SDM. This study investigates the advantages of a revised observer inventory taking into account these aspects. Based on the OPTION scale, a more comprehensive observation-based inventory was developed, additionally considering both the patient-sided indicators for patient involvement and the criteria of evidence-based patient information. The inventory comprises three scales (doctor, patient, doctor-patient dyad) and 15 indicators each. Rater training and re-analyses of 76 consultations previously analysed using the OPTION scale were conducted. Convergent validities were calculated between the observer-based scales and the patients' ratings on the Shared Decision Making Questionnaire, the Decisional Conflict Scale and the Control Preference Scale. Interrater reliabilities of the revised scales were high (r=.87 to .74) and even higher when only the dyadic perspective was coded (.86). The revised inventory provided additional information on the involvement taking place. No substantive correlations were found between observation-based and patients' subjective judgments. The observers' perspective on patient involvement needs to consider patient activities. Inconsistencies of patients' and observers' judgements concerning patient participation need further investigation. Copyright © 2012. Published by Elsevier GmbH.

Shared decision-making during surgical consultation for gallstones at a safety-net hospital.

PubMed

Mueck, Krislynn M; Leal, Isabel M; Wan, Charlie C; Goldberg, Braden F; Saunders, Tamara E; Millas, Stefanos G; Liang, Mike K; Ko, Tien C; Kao, Lillian S

2018-04-01

Understanding patient perspectives regarding shared decision-making is crucial to providing informed, patient-centered care. Little is known about perceptions of vulnerable patients regarding shared decision-making during surgical consultation. The purpose of this study was to evaluate whether a validated tool reflects perceptions of shared decision-making accurately among patients seeking surgical consultation for gallstones at a safety-net hospital. A mixed methods study was conducted in a sample of adult patients with gallstones evaluated at a safety-net surgery clinic between May to July 2016. Semi-structured interviews were conducted after their initial surgical consultation and analyzed for emerging themes. Patients were administered the Shared Decision-Making Questionnaire and Autonomy Preference Scale. Univariate analyses were performed to identify factors associated with shared decision-making and to compare the results of the surveys to those of the interviews. The majority of patients (N = 30) were female (90%), Hispanic (80%), Spanish-speaking (70%), and middle-aged (45.7 ± 16 years). The proportion of patients who perceived shared decision-making was greater in the Shared Decision-Making Questionnaire versus the interviews (83% vs 27%, P < .01). Age, sex, race/ethnicity, primary language, diagnosis, Autonomy Preference Scale score, and decision for operation was not associated with shared decision-making. Contributory factors to this discordance include patient unfamiliarity with shared decision-making, deference to surgeon authority, lack of discussion about different treatments, and confusion between aligned versus shared decisions. Available questionnaires may overestimate shared decision-making in vulnerable patients suggesting the need for alternative or modifications to existing methods. Furthermore, such metrics should be assessed for correlation with patient-reported outcomes, such as satisfaction with decisions and health status. Copyright © 2017 Elsevier Inc. All rights reserved.

Surveying hospital network structure in New York State: how are they structured?

PubMed

Nauenberg, E; Brewer, C S

2000-01-01

We determine the most common network structures in New York state. The taxonomy employed uses three structural dimensions: integration, complexity, and risk-sharing between organizations. Based on a survey conducted in 1996, the most common type of network (26.4 percent) had medium levels of integration, medium or high levels of complexity, and some risk-sharing. Also common were networks with low levels of integration, low levels of complexity, and no risk-sharing (22.1 percent).

Patients want granular privacy control over health information in electronic medical records.

PubMed

Caine, Kelly; Hanania, Rima

2013-01-01

To assess patients' desire for granular level privacy control over which personal health information should be shared, with whom, and for what purpose; and whether these preferences vary based on sensitivity of health information. A card task for matching health information with providers, questionnaire, and interview with 30 patients whose health information is stored in an electronic medical record system. Most patients' records contained sensitive health information. No patients reported that they would prefer to share all information stored in an electronic medical record (EMR) with all potential recipients. Sharing preferences varied by type of information (EMR data element) and recipient (eg, primary care provider), and overall sharing preferences varied by participant. Patients with and without sensitive records preferred less sharing of sensitive versus less-sensitive information. Patients expressed sharing preferences consistent with a desire for granular privacy control over which health information should be shared with whom and expressed differences in sharing preferences for sensitive versus less-sensitive EMR data. The pattern of results may be used by designers to generate privacy-preserving EMR systems including interfaces for patients to express privacy and sharing preferences. To maintain the level of privacy afforded by medical records and to achieve alignment with patients' preferences, patients should have granular privacy control over information contained in their EMR.

Disorder-specific functional abnormalities during temporal discounting in youth with Attention Deficit Hyperactivity Disorder (ADHD), Autism and comorbid ADHD and Autism.

PubMed

Chantiluke, Kaylita; Christakou, Anastasia; Murphy, Clodagh M; Giampietro, Vincent; Daly, Eileen M; Ecker, Christina; Brammer, Michael; Murphy, Declan G; Rubia, Katya

2014-08-30

Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) are often comorbid and share cognitive abnormalities in temporal foresight. A key question is whether shared cognitive phenotypes are based on common or different underlying pathophysiologies and whether comorbid patients have additive neurofunctional deficits, resemble one of the disorders or have a different pathophysiology. We compared age- and IQ-matched boys with non-comorbid ADHD (18), non-comorbid ASD (15), comorbid ADHD and ASD (13) and healthy controls (18) using functional magnetic resonance imaging (fMRI) during a temporal discounting task. Only the ASD and the comorbid groups discounted delayed rewards more steeply. The fMRI data showed both shared and disorder-specific abnormalities in the three groups relative to controls in their brain-behaviour associations. The comorbid group showed both unique and more severe brain-discounting associations than controls and the non-comorbid patient groups in temporal discounting areas of ventromedial and lateral prefrontal cortex, ventral striatum and anterior cingulate, suggesting that comorbidity is neither an endophenocopy of the two pure disorders nor an additive pathology. Copyright © 2014 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

CINRG: Infrastructure for Clinical Trials in Duchenne Dystrophy

DTIC Science & Technology

2013-09-01

research centers sharing a common goal of improving the quality of life of neuromuscular disease patients by cooperative planning , implementation, analysis...discrepancies were noted surrounding the regulatory binder, consent process and data records. The site personnel have a scheduled plan with the CINRG CC...missing long term follow-up visits). The project manager also reviewed the study records to date while onsite. A high priority plan was developed with the

Neuropsychological characteristics of child and adolescent offspring of patients with schizophrenia or bipolar disorder.

PubMed

de la Serna, Elena; Sugranyes, Gisela; Sanchez-Gistau, Vanessa; Rodriguez-Toscano, Elisa; Baeza, Immaculada; Vila, Montserrat; Romero, Soledad; Sanchez-Gutierrez, Teresa; Penzol, Mª José; Moreno, Dolores; Castro-Fornieles, Josefina

2017-05-01

Schizophrenia (SZ) and bipolar disorder (BD) are considered neurobiological disorders which share some clinical, cognitive and neuroimaging characteristics. Studying child and adolescent offspring of patients diagnosed with bipolar disorder (BDoff) or schizophrenia (SZoff) is regarded as a reliable method for investigating early alterations and vulnerability factors for these disorders. This study compares the neuropsychological characteristics of SZoff, BDoff and a community control offspring group (CC) with the aim of examining shared and differential cognitive characteristics among groups. 41 SZoff, 90 BDoff and 107 CC were recruited. They were all assessed with a complete neuropsychological battery which included intelligence quotient, working memory (WM), processing speed, verbal memory and learning, visual memory, executive functions and sustained attention. SZoff and BDoff showed worse performance in some cognitive areas compared with CC. Some of these difficulties (visual memory) were common to both offspring groups, whereas others, such as verbal learning and WM in SZoff or PSI in BDoff, were group-specific. The cognitive difficulties in visual memory shown by both the SZoff and BDoff groups might point to a common endophenotype in the two disorders. Difficulties in other cognitive functions would be specific depending on the family diagnosis. Copyright © 2016 Elsevier B.V. All rights reserved.

Exchanging narratives-A qualitative study of peer support among surgical lung cancer patients.

PubMed

Borregaard, Britt; Ludvigsen, Mette Spliid

2018-01-01

The aim of this study was to examine how hospitalised, surgical lung cancer patients experience talking to a former patient, and how the former patient experiences the role as supportive. During hospitalisation, patients often create a community in which they can engage with fellow patients. The exchange of experiences with others in a similar situation might increase opportunities for support and complement nursing care, but there is a need for more evidence and understanding on the topic. The methodological framework is based on the French philosopher Paul Ricoeur's text interpretation theory. Qualitative interviews were conducted with nine patients, including a peer informant, using a narrative structure. The analysis was conducted on three levels: (i) naïve reading, (ii) structural analysis and (iii) critical interpretation . Four themes were developed from the analysis of the interviews: Exchanging emotional thoughts is easier with a peer; Talking to a peer reduces loneliness; Being ambiguous about a relationship with fellow patients; and Being the main person in the conversation with a peer. Sharing stories about having similar symptoms and undergoing similar journeys predominated, and the key feature of the contact between patients was the commonality of their stories. Telling one's story to a former patient, and thereby creating a joint, common story, is the essence of this study. The support received in this process can be empowering because knowledge of the illness experience is shared and increased. This can help create new coping strategies. The contact with a former patient offered a way to confirm one's thoughts and to find a way out of the illness perspective, by seeing how the former patient had recovered. The nursing field faces challenges in the relational aspect of caring because of ever greater efficient and shortened hospital stays; therefore, the peer support concept is becoming increasingly relevant. Patient peers offer each other their own perspectives, and it is important to raise awareness of the value of this and incorporate it into patient stays in hospital. © 2017 John Wiley & Sons Ltd.

Using evidence-based internet interventions to reduce health disparities worldwide.

PubMed

Muñoz, Ricardo F

2010-12-17

Health disparities are a persistent problem worldwide. A major obstacle to reducing health disparities is reliance on "consumable interventions," that is, interventions that, once used, cannot be used again. To reduce health disparities, interventions are required that can be used again and again without losing their therapeutic power, that can reach people even if local health care systems do not provide them with needed health care, and that can be shared globally without taking resources away from the populations where the interventions were developed. This paper presents the argument that automated self-help evidence-based Internet interventions meet the above criteria and can contribute to the reduction of health disparities worldwide. Proof-of-concept studies show that evidence-based Internet interventions can reach hundreds of thousands of people worldwide and could be used in public sector settings to augment existing offerings and provide services not currently available (such as prevention interventions). This paper presents a framework for systematically filling in a matrix composed of columns representing common health problems and rows representing languages. To bring the benefits of evidence-based Internet interventions to the underserved, public sector clinics should establish eHealth resource centers, through which patients could be screened online for common disorders and provided with evidence-based Internet intervention services not currently available at the clinics. These resources should be available in the patients' languages, in formats that do not require literacy, and that can be accessed with mobile devices. Such evidence-based Internet interventions should then be shared with public sector clinics as well as individuals anywhere in the world. Finally, this paper addresses sustainability and describes a continuum of evidence-based Internet interventions to share nationally and across the world. This approach to expanding health service delivery will significantly contribute to a reduction of health disparities worldwide, adding to the often-quoted slogan, "Think globally, act locally," a third line: "Share globally."

In-frame seven amino-acid duplication in AIP arose over the last 3000 years, disrupts protein interaction and stability and is associated with gigantism

PubMed Central

Salvatori, Roberto; Radian, Serban; Diekmann, Yoan; Iacovazzo, Donato; David, Alessia; Gabrovska, Plamena; Grassi, Giorgia; Bussell, Anna-Marie; Stals, Karen; Weber, Astrid; Quinton, Richard; Crowne, Elizabeth C; Corazzini, Valentina; Metherell, Lou; Kearney, Tara; Du Plessis, Daniel; Sinha, Ajay Kumar; Baborie, Atik; Lecoq, Anne-Lise; Chanson, Philippe; Ansorge, Olaf; Ellard, Sian; Trainer, Peter J; Balding, David; Thomas, Mark G

2017-01-01

Objective Mutations in the aryl hydrocarbon receptor-interacting protein (AIP) gene are associated with pituitary adenoma, acromegaly and gigantism. Identical alleles in unrelated pedigrees could be inherited from a common ancestor or result from recurrent mutation events. Design and methods Observational, inferential and experimental study, including: AIP mutation testing; reconstruction of 14 AIP-region (8.3 Mbp) haplotypes; coalescent-based approximate Bayesian estimation of the time to most recent common ancestor (tMRCA) of the derived allele; forward population simulations to estimate current number of allele carriers; proposal of mutation mechanism; protein structure predictions; co-immunoprecipitation and cycloheximide chase experiments. Results Nine European-origin, unrelated c.805_825dup-positive pedigrees (four familial, five sporadic from the UK, USA and France) included 16 affected (nine gigantism/four acromegaly/two non-functioning pituitary adenoma patients and one prospectively diagnosed acromegaly patient) and nine unaffected carriers. All pedigrees shared a 2.79 Mbp haploblock around AIP with additional haploblocks privately shared between subsets of the pedigrees, indicating the existence of an evolutionarily recent common ancestor, the ‘English founder’, with an estimated median tMRCA of 47 generations (corresponding to 1175 years) with a confidence interval (9–113 generations, equivalent to 225–2825 years). The mutation occurred in a small tandem repeat region predisposed to slipped strand mispairing. The resulting seven amino-acid duplication disrupts interaction with HSP90 and leads to a marked reduction in protein stability. Conclusions The c.805_825dup allele, originating from a common ancestor, associates with a severe clinical phenotype and a high frequency of gigantism. The mutation is likely to be the result of slipped strand mispairing and affects protein–protein interactions and AIP protein stability. PMID:28634279

In-frame seven amino-acid duplication in AIP arose over the last 3000 years, disrupts protein interaction and stability and is associated with gigantism.

PubMed

Salvatori, Roberto; Radian, Serban; Diekmann, Yoan; Iacovazzo, Donato; David, Alessia; Gabrovska, Plamena; Grassi, Giorgia; Bussell, Anna-Marie; Stals, Karen; Weber, Astrid; Quinton, Richard; Crowne, Elizabeth C; Corazzini, Valentina; Metherell, Lou; Kearney, Tara; Du Plessis, Daniel; Sinha, Ajay Kumar; Baborie, Atik; Lecoq, Anne-Lise; Chanson, Philippe; Ansorge, Olaf; Ellard, Sian; Trainer, Peter J; Balding, David; Thomas, Mark G; Korbonits, Márta

2017-09-01

Mutations in the aryl hydrocarbon receptor-interacting protein ( AIP ) gene are associated with pituitary adenoma, acromegaly and gigantism. Identical alleles in unrelated pedigrees could be inherited from a common ancestor or result from recurrent mutation events. Observational, inferential and experimental study, including: AIP mutation testing; reconstruction of 14 AIP -region (8.3 Mbp) haplotypes; coalescent-based approximate Bayesian estimation of the time to most recent common ancestor (tMRCA) of the derived allele; forward population simulations to estimate current number of allele carriers; proposal of mutation mechanism; protein structure predictions; co-immunoprecipitation and cycloheximide chase experiments. Nine European-origin, unrelated c.805_825dup-positive pedigrees (four familial, five sporadic from the UK, USA and France) included 16 affected (nine gigantism/four acromegaly/two non-functioning pituitary adenoma patients and one prospectively diagnosed acromegaly patient) and nine unaffected carriers. All pedigrees shared a 2.79 Mbp haploblock around AIP with additional haploblocks privately shared between subsets of the pedigrees, indicating the existence of an evolutionarily recent common ancestor, the 'English founder', with an estimated median tMRCA of 47 generations (corresponding to 1175 years) with a confidence interval (9-113 generations, equivalent to 225-2825 years). The mutation occurred in a small tandem repeat region predisposed to slipped strand mispairing. The resulting seven amino-acid duplication disrupts interaction with HSP90 and leads to a marked reduction in protein stability. The c.805_825dup allele, originating from a common ancestor, associates with a severe clinical phenotype and a high frequency of gigantism. The mutation is likely to be the result of slipped strand mispairing and affects protein-protein interactions and AIP protein stability. © 2017 The authors.

Digital Photograph Security: What Plastic Surgeons Need to Know.

PubMed

Thomas, Virginia A; Rugeley, Patricia B; Lau, Frank H

2015-11-01

Sharing and storing digital patient photographs occur daily in plastic surgery. Two major risks associated with the practice, data theft and Health Insurance Portability and Accountability Act (HIPAA) violations, have been dramatically amplified by high-speed data connections and digital camera ubiquity. The authors review what plastic surgeons need to know to mitigate those risks and provide recommendations for implementing an ideal, HIPAA-compliant solution for plastic surgeons' digital photography needs: smartphones and cloud storage. Through informal discussions with plastic surgeons, the authors identified the most common photograph sharing and storage methods. For each method, a literature search was performed to identify the risks of data theft and HIPAA violations. HIPAA violation risks were confirmed by the second author (P.B.R.), a compliance liaison and privacy officer. A comprehensive review of HIPAA-compliant cloud storage services was performed. When possible, informal interviews with cloud storage services representatives were conducted. The most common sharing and storage methods are not HIPAA compliant, and several are prone to data theft. The authors' review of cloud storage services identified six HIPAA-compliant vendors that have strong to excellent security protocols and policies. These options are reasonably priced. Digital photography and technological advances offer major benefits to plastic surgeons but are not without risks. A proper understanding of data security and HIPAA regulations needs to be applied to these technologies to safely capture their benefits. Cloud storage services offer efficient photograph sharing and storage with layers of security to ensure HIPAA compliance and mitigate data theft risk.

Does sharing the electronic health record in the consultation enhance patient involvement? A mixed-methods study using multichannel video recording and in-depth interviews in primary care.

PubMed

Milne, Heather; Huby, Guro; Buckingham, Susan; Hayward, James; Sheikh, Aziz; Cresswell, Kathrin; Pinnock, Hilary

2016-06-01

Sharing the electronic health-care record (EHR) during consultations has the potential to facilitate patient involvement in their health care, but research about this practice is limited. We used multichannel video recordings to identify examples and examine the practice of screen-sharing within 114 primary care consultations. A subset of 16 consultations was viewed by the general practitioner and/or patient in 26 reflexive interviews. Screen-sharing emerged as a significant theme and was explored further in seven additional patient interviews. Final analysis involved refining themes from interviews and observation of videos to understand how screen-sharing occurred, and its significance to patients and professionals. Eighteen (16%) of 114 videoed consultations involved instances of screen-sharing. Screen-sharing occurred in six of the subset of 16 consultations with interviews and was a significant theme in 19 of 26 interviews. The screen was shared in three ways: 'convincing' the patient of a diagnosis or treatment; 'translating' between medical and lay understandings of disease/medication; and by patients 'verifying' the accuracy of the EHR. However, patients and most GPs perceived the screen as the doctor's domain, not to be routinely viewed by the patient. Screen-sharing can facilitate patient involvement in the consultation, depending on the way in which sharing comes about, but the perception that the record belongs to the doctor is a barrier. To exploit the potential of sharing the screen to promote patient involvement, there is a need to reconceptualise and redesign the EHR. © 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd.

Knowledge Sharing among University Students Facilitated with a Creative Commons Licensing Mechanism: A Case Study in a Programming Course

ERIC Educational Resources Information Center

Liu, Chen-Chung; Lin, Chia-Ching; Chang, Chun-Yi; Chao, Po-Yao

2014-01-01

Creative Commons (CC) mechanism has been suggested as a potential means to foster a reliable environment for online knowledge sharing activity. This study investigates the role of the CC mechanism in supporting knowledge sharing among a group of university students studying programming from the perspectives of social cognitive and social capital…

Sharing Rare Attitudes Attracts.

PubMed

Alves, Hans

2018-04-01

People like others who share their attitudes. Online dating platforms as well as other social media platforms regularly rely on the social bonding power of their users' shared attitudes. However, little is known about moderating variables. In the present work, I argue that sharing rare compared with sharing common attitudes should evoke stronger interpersonal attraction among people. In five studies, I tested this prediction for the case of shared interests from different domains. I found converging evidence that people's rare compared with their common interests are especially potent to elicit interpersonal attraction. I discuss the current framework's theoretical implications for impression formation and impression management as well as its practical implications for improving online dating services.

Abnormal Functional Brain Asymmetry in Depression: Evidence of Biologic Commonality Between Major Depression and Dysthymia

PubMed Central

Bruder, Gerard E.; Stewart, Jonathan W.; Hellerstein, David; Alvarenga, Jorge E.; Alschuler, Daniel; McGrath, Patrick J.

2012-01-01

Prior studies have found abnormalities of functional brain asymmetry in patients having a major depressive disorder (MDD). This study aimed to replicate findings of reduced right hemisphere advantage for perceiving dichotic complex tones in depressed patients, and to determine whether patients having “pure” dysthymia show the same abnormality of perceptual asymmetry as MDD. It also examined gender differences in lateralization, and the extent to which abnormalities of perceptual asymmetry in depressed patients are dependent on gender. Unmedicated patients having either a MDD (n=96) or “pure” dysthymic disorder (n=42) and healthy controls (n=114) were tested on dichotic fused-words and complex-tone tests. Patient and control groups differed in right hemisphere advantage for complex tones, but not left hemisphere advantage for words. Reduced right hemisphere advantage for tones was equally present in MDD and dysthymia, but was more evident among depressed men than depressed women. Also, healthy men had greater hemispheric asymmetry than healthy women for both words and tones, whereas this gender difference was not seen for depressed patients. Dysthymia and MDD share a common abnormality of hemispheric asymmetry for dichotic listening. PMID:22397909

Abnormal functional brain asymmetry in depression: evidence of biologic commonality between major depression and dysthymia.

PubMed

Bruder, Gerard E; Stewart, Jonathan W; Hellerstein, David; Alvarenga, Jorge E; Alschuler, Daniel; McGrath, Patrick J

2012-04-30

Prior studies have found abnormalities of functional brain asymmetry in patients having a major depressive disorder (MDD). This study aimed to replicate findings of reduced right hemisphere advantage for perceiving dichotic complex tones in depressed patients, and to determine whether patients having "pure" dysthymia show the same abnormality of perceptual asymmetry as MDD. It also examined gender differences in lateralization, and the extent to which abnormalities of perceptual asymmetry in depressed patients are dependent on gender. Unmedicated patients having either a MDD (n=96) or "pure" dysthymic disorder (n=42) and healthy controls (n=114) were tested on dichotic fused-words and complex-tone tests. Patient and control groups differed in right hemisphere advantage for complex tones, but not left hemisphere advantage for words. Reduced right hemisphere advantage for tones was equally present in MDD and dysthymia, but was more evident among depressed men than depressed women. Also, healthy men had greater hemispheric asymmetry than healthy women for both words and tones, whereas this gender difference was not seen for depressed patients. Dysthymia and MDD share a common abnormality of hemispheric asymmetry for dichotic listening. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Patient-controlled sharing of medical imaging data across unaffiliated healthcare organizations

PubMed Central

Ahn, David K; Unde, Bhagyashree; Gage, H Donald; Carr, J Jeffrey

2013-01-01

Background Current image sharing is carried out by manual transportation of CDs by patients or organization-coordinated sharing networks. The former places a significant burden on patients and providers. The latter faces challenges to patient privacy. Objective To allow healthcare providers efficient access to medical imaging data acquired at other unaffiliated healthcare facilities while ensuring strong protection of patient privacy and minimizing burden on patients, providers, and the information technology infrastructure. Methods An image sharing framework is described that involves patients as an integral part of, and with full control of, the image sharing process. Central to this framework is the Patient Controlled Access-key REgistry (PCARE) which manages the access keys issued by image source facilities. When digitally signed by patients, the access keys are used by any requesting facility to retrieve the associated imaging data from the source facility. A centralized patient portal, called a PCARE patient control portal, allows patients to manage all the access keys in PCARE. Results A prototype of the PCARE framework has been developed by extending open-source technology. The results for feasibility, performance, and user assessments are encouraging and demonstrate the benefits of patient-controlled image sharing. Discussion The PCARE framework is effective in many important clinical cases of image sharing and can be used to integrate organization-coordinated sharing networks. The same framework can also be used to realize a longitudinal virtual electronic health record. Conclusion The PCARE framework allows prior imaging data to be shared among unaffiliated healthcare facilities while protecting patient privacy with minimal burden on patients, providers, and infrastructure. A prototype has been implemented to demonstrate the feasibility and benefits of this approach. PMID:22886546

Health Care Exceptionalism? Performance and Allocation in the US Health Care Sector

PubMed Central

Chandra, Amitabh; Finkelstein, Amy; Sacarny, Adam; Syverson, Chad

2016-01-01

The conventional wisdom for the healthcare sector is that idiosyncratic features leave little scope for market forces to allocate consumers to higher performance producers. However, we find robust evidence - across several different conditions and performance measures - that higher quality hospitals have higher market shares and grow more over time. The relationship between performance and allocation is stronger among patients who have greater scope for hospital choice, suggesting that patient demand plays an important role in allocation. Our findings suggest that healthcare may have more in common with “traditional” sectors subject to market forces than often assumed. PMID:27784907

Polycystic ovary syndrome and metabolic syndrome: the worrisome twosome?

PubMed

Shah, D; Rasool, S

2016-01-01

By virtue of insulin resistance being the common etiology for polycystic ovary syndrome (PCOS) and metabolic syndrome, the cardiometabolic risks of these two syndromes are shared. The usual concerns of a PCOS patient are cosmetic or reproductive. However, there are more serious concerns past the reproductive age. Early treatment of insulin resistance, hypertension and hyperlipidemia reduces the long-term risk. This review highlights the unhealthy association of metabolic syndrome with PCOS and emphasizes the importance of early diagnosis, patient education and long-term follow-up beyond the reproductive age into menopause to prevent the long-term serious co-morbidities.

Inflammatory bowel disease and airway diseases.

PubMed

Vutcovici, Maria; Brassard, Paul; Bitton, Alain

2016-09-14

Airway diseases are the most commonly described lung manifestations of inflammatory bowel disease (IBD). However, the similarities in disease pathogenesis and the sharing of important environmental risk factors and genetic susceptibility suggest that there is a complex interplay between IBD and airway diseases. Recent evidence of IBD occurrence among patients with airway diseases and the higher than estimated prevalence of subclinical airway injuries among IBD patients support the hypothesis of a two-way association. Future research efforts should be directed toward further exploration of this association, as airway diseases are highly prevalent conditions with a substantial public health impact.

Lymphocytic gastritis, gastric adenocarcinoma, and primary gastric lymphoma.

PubMed Central

Griffiths, A P; Wyatt, J; Jack, A S; Dixon, M F

1994-01-01

A series of primary gastric lymphomas and adenocarcinomas was reviewed to assess the prevalence of lymphocytic gastritis in these conditions. Lymphocytic gastritis was more prevalent in patients with gastric adenocarcinoma (16 of 130 cases; 12.3%) and primary gastric lymphoma (six of 45 cases; 13.7%) than in unselected patients undergoing endoscopy (0.83-2.5%). This suggests that these two disparate gastric tumours may share an immunological dysfunction or a common pathogenesis, and this is of interest given that Helicobacter pylori is thought to have a role in the evolution of gastric adenocarcinoma and lymphoma. PMID:7876391

Post-epilepsy stroke: A review.

PubMed

Jin, Jing; Chen, Rong; Xiao, Zheng

2016-01-01

Stroke and epilepsy are two of the most common neurological disorders and share a complicated relationship. It is well established that stroke is one of the most important causes of epilepsy, particularly new-onset epilepsy among the elderly. However, post-epilepsy stroke has been overlooked. In recent years, it has been demonstrated that epilepsy patients have increased risk and mortality from stroke when compared with the general population. Additionally, it was proposed that post-epilepsy stroke might be associated with antiepileptic drugs (AEDs), epileptic seizures and the lifestyle of epileptic patients. Here, we comprehensively review the epidemiology, causes and interventions for post-epilepsy stroke.

Mechanistic and clinical insights at the scleroderma-cancer interface

PubMed Central

Shah, Ami A.; Casciola-Rosen, Livia

2017-01-01

Emerging data suggest tantalizing links between cancer and systemic inflammatory rheumatic syndromes. In scleroderma, patients may have an increased risk of cancer secondary to chronic inflammation and damage from the disease, malignant transformation promoted by immunosuppressive therapies, a shared susceptibility to both cancer and autoimmunity, or a common inciting exposure. However, it is increasingly recognized that a subset of patients develop cancer around the time that scleroderma clinically manifests, raising the question of cancer-induced autoimmunity. In this review, we discuss data suggesting a mechanistic link between cancer and the development of scleroderma, and the clinical implications of these findings. PMID:29264402

Coping with Prescription Drug Cost Sharing: Knowledge, Adherence, and Financial Burden

PubMed Central

Reed, Mary; Brand, Richard; Newhouse, Joseph P; Selby, Joe V; Hsu, John

2008-01-01

Objective Assess patient knowledge of and response to drug cost sharing. Study Setting Adult members of a large prepaid, integrated delivery system. Study Design/Data Collection Telephone interviews with 932 participants (72 percent response rate) who reported knowledge of the structures and amounts of their prescription drug cost sharing. Participants reported cost-related changes in their drug adherence, any financial burden, and other cost-coping behaviors. Actual cost sharing amounts came from administrative databases. Principal Findings Overall, 27 percent of patients knew all of their drug cost sharing structures and amounts. After adjustment for individual characteristics, additional patient cost sharing structures (tiers and caps), and higher copayment amounts were associated with reporting decreased adherence, financial burden, or other cost-coping behaviors. Conclusions Patient knowledge of their drug benefits is limited, especially for more complex cost sharing structures. Patients also report a range of responses to greater cost sharing, including decreasing adherence. PMID:18370979

Consideration of Shared Decision Making in Nursing: A Review of Clinicians’ Perceptions and Interventions

PubMed Central

Clark, Noreen M; Nelson, Belinda W; Valerio, Melissa A; Gong, Z. Molly; Taylor-Fishwick, Judith C; Fletcher, Monica

2009-01-01

As the number of individuals with chronic illness increases so has the need for strategies to enable nurses to engage them effectively in daily management of their conditions. Shared decision making between patients and nurses is one approach frequently discussed in the literature. This paper reviews recent studies of shared decision making and the meaning of findings for the nurse-patient relationship. Patients likely to prefer to engage in shared decision making are younger and have higher levels of education. However, there is a lack of evidence for the effect of shared decision making on patient outcomes. Further, studies are needed to examine shared decision making when the patient is a child. Nurses are professionally suited to engage their patients fully in treatment plans. More evidence for how shared decision making affects outcomes and how nurses can successfully achieve such engagement is needed. PMID:19855848

The role of informed consent in patient complaints: Reducing hidden health system costs and improving patient engagement through shared decision making.

PubMed

Posner, Karen L; Severson, Julie; Domino, Karen B

2015-09-01

Patient complaints about physicians are strongly associated with malpractice risk. Physicians at high risk for lawsuits tend to have poor communication skills and are more commonly the subject of patient complaints about communication issues. If a malpractice action does not arise, patient complaints nonetheless represent significant prelitigation transaction costs for the healthcare system that have not been previously quantified. Informed consent complaints represent a unique constellation of clinical communication skills clearly tied to malpractice risk. The goal of this study was to measure institutional resource consumption allocated to informed consent (IC) complaints, which are both costly and preventable. We compared IC complaints to other complaints about medical care in a single medical center in the United States, estimating the absolute and relative burden of IC deficiencies within this healthcare system. Resource consumption for the resolution of IC complaints far exceeded their proportional representation of complaints, representing half of all complaints, while disproportionately absorbing two-thirds of staff time devoted to complaint resolution. Complaint resolution represents an unrecognized remediable cost and an underappreciated opportunity for reducing waste in healthcare. We suggest that healthcare systems can reduce costs and elevate their patient-centered care practices by improving patient-provider communication during medical decision making via engagement strategies such as shared decision making. © 2015 American Society for Healthcare Risk Management of the American Hospital Association.

The communication process in clinical settings.

PubMed

Mathews, J J

1983-01-01

The communication of information in clinical settings is fraught with problems despite avowed common aims of practitioners and patients. Some reasons for the problematic nature of clinical communication are incongruent frames of reference about what information ought to be shared, sociolinguistic differences and social distance between practitioners and patients. Communication between doctors and nurses is also problematic, largely due to differences in ideology between the professions about what ought to be communicated to patients about their illness and who is ratified to give such information. Recent social changes, such as the Patient Bill of Rights and informed consent which assure access to information, and new conceptualizations of the nurse's role, warrant continued study of the communication process especially in regard to what constitutes appropriate and acceptable information about a patient's illness and who ought to give such information to patients. The purpose of this paper is to outline characteristics of communication in clinical settings and to provide a literature review of patient and practitioner interaction studies in order to reflect on why information exchange is problematic in clinical settings. A framework for presentation of the problems employs principles from interaction and role theory to investigate clinical communication from three viewpoints: (1) the level of shared knowledge between participants; (2) the effect of status, role and ideology on transactions; and (3) the regulation of communication imposed by features of the institution.

Exploring Nurse Communication About Spirituality.

PubMed

Wittenberg, Elaine; Ragan, Sandra L; Ferrell, Betty

2017-07-01

Although spiritual care is considered one of the pillars of palliative care, many health-care providers never receive formal training on how to communicate about spirituality with patients and families. The aim of this study was to explore the spiritual care experiences of oncology nurses in order to learn more about patient needs and nurse responses. A survey was circulated at a communication training course for oncology nurses in June 2015. Nurses recalled a care experience that included the initiation of a spiritual care topic and their response to the patient/family. Data were analyzed using thematic analysis. Nurses reported that communication about spirituality was primarily initiated by patients, rather than family members, and spiritual topics commonly emerged during the end of life or when patients experienced spiritual distress. Nurses' experiences highlighted the positive impact spiritual conversations had on the quality of patient care and its benefit to families. Spiritual communication was described as an important nursing role at the end of patients' lives, and nonverbal communication, listening, and discussing patients' emotions were emphasized as important and effective nurse communication skills during spiritual care conversations. Approximately one-third of nurses in the sample reported sharing their own personal spiritual or religious backgrounds with patients, and they reported that these sharing experiences strengthened their own faith. It is evident that patients want to discuss spiritual topics during care. Study findings illustrate the need to develop a spiritual communication curriculum and provide spiritual care communication training to clinicians.

Twenty-First Century Diseases: Commonly Rare and Rarely Common?

PubMed

Daunert, Sylvia; Sittampalam, Gurusingham Sitta; Goldschmidt-Clermont, Pascal J

2017-09-20

Alzheimer's drugs are failing at a rate of 99.6%, and success rate for drugs designed to help patients with this form of dementia is 47 times less than for drugs designed to help patients with cancers ( www.scientificamerican.com/article/why-alzheimer-s-drugs-keep-failing/2014 ). How can it be so difficult to produce a valuable drug for Alzheimer's disease? Each human has a unique genetic and epigenetic makeup, thus endowing individuals with a highly unique complement of genes, polymorphisms, mutations, RNAs, proteins, lipids, and complex sugars, resulting in distinct genome, proteome, metabolome, and also microbiome identity. This editorial is taking into account the uniqueness of each individual and surrounding environment, and stresses the point that a more accurate definition of a "common" disorder could be simply the amalgamation of a myriad of "rare" diseases. These rare diseases are being grouped together because they share a rather constant complement of common features and, indeed, generally respond to empirically developed treatments, leading to a positive outcome consistently. We make the case that it is highly unlikely that such treatments, despite their statistical success measured with large cohorts using standardized clinical research, will be effective on all patients until we increase the depth and fidelity of our understanding of the individual "rare" diseases that are grouped together in the "buckets" of common illnesses. Antioxid. Redox Signal. 27, 511-516.

How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role.

PubMed

Li, Lingsheng; Nelson, Judith E; Hanson, Laura C; Cox, Christopher E; Carson, Shannon S; Chai, Emily J; Keller, Kristine L; Tulsky, James A; Danis, Marion

2018-05-01

Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time. Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial. Medical ICUs at four U.S. hospitals. Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study. Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner. Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens. Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.

Mental rotation and working memory in musicians' dystonia.

PubMed

Erro, Roberto; Hirschbichler, Stephanie T; Ricciardi, Lucia; Ryterska, Agata; Antelmi, Elena; Ganos, Christos; Cordivari, Carla; Tinazzi, Michele; Edwards, Mark J; Bhatia, Kailash P

2016-11-01

Mental rotation of body parts engages cortical-subcortical areas that are actually involved in the execution of a movement. Musicians' dystonia is a type of focal hand dystonia that is grouped together with writer's cramp under the rubric of "occupational dystonia", but it is unclear to which extent these two disorders share common pathophysiological mechanisms. Previous research has demonstrated patients with writer's cramp to have deficits in mental rotation of body parts. It is unknown whether patients with musicians' dystonia would display similar deficits, reinforcing the concept of shared pathophysiology. Eight patients with musicians' dystonia and eight healthy musicians matched for age, gender and musical education, performed a number of tasks assessing mental rotation of body parts and objects as well as verbal and spatial working memories abilities. There were no differences between patients and healthy musicians as to accuracy and reaction times in any of the tasks. Patients with musicians' dystonia have intact abilities in mentally rotating body parts, suggesting that this disorder relies on a highly selective disruption of movement planning and execution that manifests only upon playing a specific instrument. We further demonstrated that mental rotation of body parts and objects engages, at least partially, different cognitive networks. Copyright © 2016 Elsevier Inc. All rights reserved.

The Experience of Older People in the Shared Decision-Making Process in Advanced Kidney Care

PubMed Central

Jenkins, Karen; McManus, Breeda; Gracey, Brian

2016-01-01

Introduction. This qualitative descriptive study was designed to understand the experiences of older people (>70 years) when making a decision about renal replacement therapy. This was a coproduced study, whereby patients and carers were involved in all aspects of the research process. Methods. A Patient and Carer Group undertook volunteer and research training. The group developed the interview questions and interviewed 29 people who had commenced dialysis or made a decision not to have dialysis. Interview data were transcribed and analysed, and common themes were identified. Results. 22 men and 7 women (mean age 77.4 yrs) from two hospitals were interviewed. 18 had chosen haemodialysis, 6 peritoneal dialysis, and 5 supportive care. The majority of patients were involved in the dialysis decision. Most were satisfied with the amount of information that they received, although some identified that the quality of the information could be improved, especially how daily living can be affected by dialysis. Conclusion. Our findings show that overall older patients were involved in the dialysis decision along with their families. Our approach is innovative because it is the first time that patients and carers have been involved in a coproduced study about shared decision-making. PMID:27990438

Integrating cultural community psychology: activity settings and the shared meanings of intersubjectivity.

PubMed

O'Donnell, Clifford R; Tharp, Roland G

2012-03-01

Cultural and community psychology share a common emphasis on context, yet their leading journals rarely cite each other's articles. Greater integration of the concepts of culture and community within and across their disciplines would enrich and facilitate the viability of cultural community psychology. The contextual theory of activity settings is proposed as one means to integrate the concepts of culture and community in cultural community psychology. Through shared activities, participants develop common experiences that affect their psychological being, including their cognitions, emotions, and behavioral development. The psychological result of these experiences is intersubjectivity. Culture is defined as the shared meanings that people develop through their common historic, linguistic, social, economic, and political experiences. The shared meanings of culture arise through the intersubjectivity developed in activity settings. Cultural community psychology presents formidable epistemological challenges, but overcoming these challenges could contribute to the transformation and advancement of community psychology.

Pediatric scleroderma: systemic or localized forms.

PubMed

Torok, Kathryn S

2012-04-01

Pediatric scleroderma includes 2 major groups of clinical entities, systemic sclerosis (SSc) and localized scleroderma (LS). Although both share a common pathophysiology, their clinical manifestations differ. LS is typically confined to the skin and underlying subcutis, with up to a quarter of patients showing extracutaneous disease manifestations such as arthritis and uveitis. Vascular, cutaneous, gastrointestinal, pulmonary, and musculoskeletal involvement are most commonly seen in children with SSc. Treatment of both forms targets the active inflammatory stage and halts disease progression; however, progress needs to be made toward the development of more effective antifibrotic therapy to help reverse disease damage. Copyright © 2012 Elsevier Inc. All rights reserved.

Ten Years, Forty Decision Aids, And Thousands Of Patient Uses: Shared Decision Making At Massachusetts General Hospital.

PubMed

Sepucha, Karen R; Simmons, Leigh H; Barry, Michael J; Edgman-Levitan, Susan; Licurse, Adam M; Chaguturu, Sreekanth K

2016-04-01

Shared decision making is a core component of population health strategies aimed at improving patient engagement. Massachusetts General Hospital's integration of shared decision making into practice has focused on the following three elements: developing a culture receptive to, and health care providers skilled in, shared decision making conversations; using patient decision aids to help inform and engage patients; and providing infrastructure and resources to support the implementation of shared decision making in practice. In the period 2005-15, more than 900 clinicians and other staff members were trained in shared decision making, and more than 28,000 orders for one of about forty patient decision aids were placed to support informed patient-centered decisions. We profile two different implementation initiatives that increased the use of patient decision aids at the hospital's eighteen adult primary care practices, and we summarize key elements of the shared decision making program. Project HOPE—The People-to-People Health Foundation, Inc.

Implementation of shared decision making in anaesthesia and its influence on patient satisfaction.

PubMed

Flierler, W J; Nübling, M; Kasper, J; Heidegger, T

2013-07-01

There is a lack of data about the implementation of shared decision making in anaesthesia. To assess patients' preference to be involved in medical decision making and its influence on patient satisfaction, we studied 197 matched pairs (patients and anaesthetists) using two previously validated questionnaires. Before surgery, patients had to decide between general vs regional anaesthesia and, where appropriate, between conventional postoperative pain therapy vs catheter techniques. One hundred and eighty-six patients (94%) wished to be involved in shared decision making. One hundred and twenty-two patients (62%) experienced the exact amount of shared decision making that they wanted; 44 (22%) were slightly more involved and 20 (10%) slightly less involved in shared decision making than they desired. Preferences regarding involvement in shared decision making were similar between patients and anaesthetists with mean (SD) points of 54.1 (16.2) vs 56.4 (27.6) (p=0.244), respectively on a 0-100 scale; however, patients were found to have a stronger preference for a totally balanced shared decision-making process (65% vs 32%). Overall patient satisfaction was high: 88% were very satisfied and 12% satisfied with a mean (SD) value of 96.1 (10.6) on a 0-100 scale. Shared decision making is important for providing high levels of patient satisfaction. Anaesthesia © 2013 The Association of Anaesthetists of Great Britain and Ireland.

The Non-Problem of the Other Minds: A Neurodevelopmental Perspective on Shared Intentionality

ERIC Educational Resources Information Center

Colle, Livia; Becchio, Cristina; Bara, Bruno G.

2008-01-01

In this paper, we combine neurological and developmental evidences in order to differentiate between two levels of sharing: dyadic sharing, virtually present from birth and depending on the activation of shared representation, and triadic sharing, requiring that agents not only share a common representation, but also represent complementary…

Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions

PubMed Central

Sanders, G Lawrence

2017-01-01

Background Health care providers are driven by greater participation and systemic cost savings irrespective of benefits to individual patients derived from sharing Personal Health Information (PHI). Protecting PHI is a critical issue in the sharing of health care information systems; yet, there is very little literature examining the topic of sharing PHI electronically. A good overview of the regulatory, privacy, and societal barriers to sharing PHI can be found in the 2009 Health Information Technology for Economic and Clinical Health Act. Objective This study investigated the factors that influence individuals’ intentions to share their PHI electronically with health care providers, creating an understanding of how we can represent a patient’s interests more accurately in sharing settings, instead of treating patients like predetermined subjects. Unlike privacy concern and trust, patient activation is a stable trait that is not subject to change in the short term and, thus, is a useful factor in predicting sharing behavior. We apply the extended privacy model in the health information sharing context and adapt this model to include patient activation and issue involvement to predict individuals’ intentions. Methods This was a survey-based study with 1600+ participants using the Health Information National Trends Survey (HINTS) data to validate a model through various statistical techniques. The research method included an assessment of both the measurement and structural models with post hoc analysis. Results We find that privacy concern has the most influence on individuals’ intentions to share. Patient activation, issue involvement, and patient-physician relationship are significant predictors of sharing intention. We contribute to theory by introducing patient activation and issue involvement as proxies for personal interest factors in the health care context. Conclusions Overall, this study found that although patients are open to sharing their PHI, they still have concerns over the privacy of their PHI during the sharing process. It is paramount to address this factor to increase information flow and identify how patients can assure that their privacy is protected. The outcome of this study is a set of recommendations for motivating the sharing of PHI. The goal of this research is to increase the health profile of the patients by integrating the testing and diagnoses of various doctors across health care providers and, thus, bring patients closer to the physicians. PMID:28903895

Special care dentistry for general dental practice.

PubMed

Greig, Vicki; Sweeney, Petrina

2013-01-01

Although special care dentistry (SCD) is a fairly recent specialty, the principles and practice of SCD have been developed since the 1980s. Shared care of these patients with general dental practitioners remains vital to ensure that comprehensive care is provided. This article aims to discuss some of the patient groups commonly seen in SCD clinics and give an insight into the varied complex medical and social aspects of care which are managed as part of providing appropriate, safe and holistic care. Many patients who currently fall under the remit of special care dentistry could be treated safely in general dental practice. This article acts as an introduction to special care dentistry for general dental practitioners.

75 FR 57310 - American Capital, Ltd.; Notice of Application

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-20

... markets for the common stock, the Fair Market Value will be determined in good faith by the Board, but in.... Under the Plan, a maximum of 750,000 shares of applicant's common stock, in the aggregate, may be issued to Non-employee Directors and options to purchase 93,750 shares of applicant's common stock may be...

Young Children's Understanding of Cultural Common Ground

ERIC Educational Resources Information Center

Liebal, Kristin; Carpenter, Malinda; Tomasello, Michael

2013-01-01

Human social interaction depends on individuals identifying the common ground they have with others, based both on personally shared experiences and on cultural common ground that all members of the group share. We introduced 3- and 5-year-old children to a culturally well-known object and a novel object. An experimenter then entered and asked,…

A common brain network among state, trait, and pathological anxiety from whole-brain functional connectivity.

PubMed

Takagi, Yu; Sakai, Yuki; Abe, Yoshinari; Nishida, Seiji; Harrison, Ben J; Martínez-Zalacaín, Ignacio; Soriano-Mas, Carles; Narumoto, Jin; Tanaka, Saori C

2018-05-15

Anxiety is one of the most common mental states of humans. Although it drives us to avoid frightening situations and to achieve our goals, it may also impose significant suffering and burden if it becomes extreme. Because we experience anxiety in a variety of forms, previous studies investigated neural substrates of anxiety in a variety of ways. These studies revealed that individuals with high state, trait, or pathological anxiety showed altered neural substrates. However, no studies have directly investigated whether the different dimensions of anxiety share a common neural substrate, despite its theoretical and practical importance. Here, we investigated a brain network of anxiety shared by different dimensions of anxiety in a unified analytical framework using functional magnetic resonance imaging (fMRI). We analyzed different datasets in a single scale, which was defined by an anxiety-related brain network derived from whole brain. We first conducted the anxiety provocation task with healthy participants who tended to feel anxiety related to obsessive-compulsive disorder (OCD) in their daily life. We found a common state anxiety brain network across participants (1585 trials obtained from 10 participants). Then, using the resting-state fMRI in combination with the participants' behavioral trait anxiety scale scores (879 participants from the Human Connectome Project), we demonstrated that trait anxiety shared the same brain network as state anxiety. Furthermore, the brain network between common to state and trait anxiety could detect patients with OCD, which is characterized by pathological anxiety-driven behaviors (174 participants from multi-site datasets). Our findings provide direct evidence that different dimensions of anxiety have a substantial biological inter-relationship. Our results also provide a biologically defined dimension of anxiety, which may promote further investigation of various human characteristics, including psychiatric disorders, from the perspective of anxiety. Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.

Information Sharing and Collaboration Business Plan

DTIC Science & Technology

2006-03-30

for information sharing The proposed environment will need a common definition of terms and dictionaries of competing terms where common definitions...a lexicon, a monolingual on-line handbook, and a thesaurus and ontology of abbreviations, acronyms, and terminology. (ISCO 2005, 18

Gene expression profile in cardiovascular disease and preeclampsia: a meta-analysis of the transcriptome based on raw data from human studies deposited in Gene Expression Omnibus.

PubMed

Sitras, V; Fenton, C; Acharya, G

2015-02-01

Cardiovascular disease (CVD) and preeclampsia (PE) share common clinical features. We aimed to identify common transcriptomic signatures involved in CVD and PE in humans. Meta-analysis of individual raw microarray data deposited in GEO, obtained from blood samples of patients with CVD versus controls and placental samples from women with PE versus healthy women with uncomplicated pregnancies. Annotation of cases versus control samples was taken directly from the microarray documentation. Genes that showed a significant differential expression in the majority of experiments were selected for subsequent analysis. Hypergeometric gene list analysis was performed using Bioconductor GOstats package. Bioinformatic analysis was performed in PANTHER. Seven studies in CVD and 5 studies in PE were eligible for meta-analysis. A total of 181 genes were found to be differentially expressed in microarray studies investigating gene expression in blood samples obtained from patients with CVD compared to controls and 925 genes were differentially expressed between preeclamptic and healthy placentas. Among these differentially expressed genes, 22 were common between CVD and PE. Bioinformatic analysis of these genes revealed oxidative stress, p-53 pathway feedback, inflammation mediated by chemokines and cytokines, interleukin signaling, B-cell activation, PDGF signaling, Wnt signaling, integrin signaling and Alzheimer disease pathways to be involved in the pathophysiology of both CVD and PE. Metabolism, development, response to stimulus, immune response and cell communication were the associated biologic processes in both conditions. Gene set enrichment analysis showed the following overlapping pathways between CVD and PE: TGF-β-signaling, apoptosis, graft-versus-host disease, allograft rejection, chemokine signaling, steroid hormone synthesis, type I and II diabetes mellitus, VEGF signaling, pathways in cancer, GNRH signaling, Huntingtons disease and Notch signaling. CVD and PE share same common traits in their gene expression profile indicating common pathways in their pathophysiology. Copyright © 2014 Elsevier Ltd. All rights reserved.

Adults' perceptions of genetic counseling and genetic testing.

PubMed

Houfek, Julia Fisco; Soltis-Vaughan, Brigette S; Atwood, Jan R; Reiser, Gwendolyn M; Schaefer, G Bradley

2015-02-01

This study described the perceptions of genetic counseling and testing of adults (N = 116) attending a genetic education program. Understanding perceptions of genetic counseling, including the importance of counseling topics, will contribute to patient-focused care as clinical genetic applications for common, complex disorders evolve. Participants completed a survey addressing: the importance of genetic counseling topics, benefits and negative effects of genetic testing, and sharing test results. Topics addressing practical information about genetic conditions were rated most important; topics involving conceptual genetic/genomic principles were rated least important. The most frequently identified benefit and negative effect of testing were prevention/early detection/treatment and psychological distress. Participants perceived that they were more likely to share test results with first-degree than other relatives. Findings suggest providing patients with practical information about genetic testing and genetic contributions to disease, while also determining whether their self-care abilities would be enhanced by teaching genetic/genomic principles. Copyright © 2014 Elsevier Inc. All rights reserved.

European Association of Urology (@Uroweb) recommendations on the appropriate use of social media.

PubMed

Rouprêt, Morgan; Morgan, Todd M; Bostrom, Peter J; Cooperberg, Matthew R; Kutikov, Alexander; Linton, Kate D; Palou, Joan; Martínez-Piñeiro, Luis; van der Poel, Henk; Wijburg, Carl; Winterbottom, Andrew; Woo, Henry H; Wirth, Manfred P; Catto, James W F

2014-10-01

Social media use is becoming common in medical practice. Although primarily used in this context to connect physicians, social media allows users share information, to create an online profile, to learn and keep knowledge up to date, to facilitate virtual attendance at medical conferences, and to measure impact within a field. However, shared content should be considered permanent and beyond the control of its author, and typical boundaries, such as the patient-physician interaction, become blurred, putting both parties at risk. The European Association of Urology brought together a committee of stakeholders to create guidance on the good practice and standards of use of social media. These encompass guidance about defining an online profile; managing accounts; protecting the reputations of yourself and your organization; protecting patient confidentiality; and creating honest, responsible content that reflects your standing as a physician and your membership within this profession. Copyright © 2014 European Association of Urology. Published by Elsevier B.V. All rights reserved.

Delayed-onset post-traumatic headache after a motor vehicle collision: a case report

PubMed Central

Stupar, Maja; Kim, Peter SY

2007-01-01

Introduction Headaches are common after a motor vehicle accident (MVA). Post-traumatic headaches share many clinical symptoms including the clinical course of primary headaches. Secondary headaches (including those resulting from a subdural hematoma) are not as common, but should be considered in cases of post-traumatic events particularly if clinical symptoms progress. Clinical Features A case of a patient with a post-traumatic subdural hematoma demonstrates the importance of carefully examining, properly diagnosing and managing patients that experience headaches after MVAs. This patient presented with uncomplicated low back pain, neck pain and headache which progressed at one month to include focal neurological deficits. Since clinical examination alone may not be sufficient to diagnose secondary headaches, immediate referral to the emergency department may be required. Conclusion Primary contact practitioners should be aware of the various causes of headaches that result after a MVA. Headaches, which do not respond or progress, should be followed aggressively to determine their source. PMID:17657301

Clinical assessment of organizational strategy: An examination of healthy adults.

PubMed

Banerjee, Pia; White, Desirée A

2015-06-01

During the assessment of patients with cognitive difficulties, clinicians often examine strategic processing, particularly the ability to use organization-based strategies to efficiently complete various tasks. Several commonly used neuropsychological tasks are currently thought to provide measures of organizational strategic processing, but empirical evidence for the construct validity of these strategic measures is needed before interpreting them as measuring the same underlying ability. This is particularly important for the assessment of organizational strategic processing because the measures span cognitive domains (e.g., memory strategy, language strategy) as well as types of organization. In the present study, 200 adults were administered cognitive tasks commonly used in clinical practice to assess organizational strategic processing. Factor analysis was used to examine whether these measures of organizational strategic processing, which involved different cognitive domains and types of organization, could be operationalized as measuring a unitary construct. A very good-fitting model of the data demonstrated no significant shared variance among any of the strategic variables from different tasks (root mean square error of approximation < .0001, standardized root-mean-square residual = .045, comparative fit index = 1.000). These findings suggest that organizational strategic processing is highly specific to the demands and goals of individual tasks even when tasks share commonalities such as involving the same cognitive domain. In the design of neuropsychological batteries involving the assessment of organizational strategic processing, it is recommended that various strategic measures across cognitive domains and types of organizational processing are selected as guided by each patient's individual cognitive difficulties. (c) 2015 APA, all rights reserved).

Novel Statistical Approach to Determine Inflammatory Bowel Disease: Patients' Perspectives on Shared Decision Making.

PubMed

Siegel, Corey A; Lofland, Jennifer H; Naim, Ahmad; Gollins, Jan; Walls, Danielle M; Rudder, Laura E; Reynolds, Chuck

2016-02-01

Limited information is available on patients' perspectives of shared decision-making practices used in inflammatory bowel disease (IBD). The aim of this study was to examine patient insights regarding shared decision making among patients with IBD using novel statistical technology to analyze qualitative data. Two 10-patient focus groups (10 ulcerative colitis patients and 10 Crohn's disease patients) were conducted in Chicago in January 2012 to explore patients' experiences, concerns, and preferences related to shared decision making. Key audio excerpts of focus group insights were embedded within a 25-min online patient survey and used for moment-to-moment affect trace analysis. A total of 355 IBD patients completed the survey (ulcerative colitis 51 %; Crohn's disease 49 %; female 54 %; 18-50 years of age 50 %). The majority of patients (66 %) reported increased satisfaction when they participated in shared decision making. Three unique patient clusters were identified based on their involvement in shared decision making: satisfied, content, and dissatisfied. Satisfied patients (18 %) had a positive physician relationship and a high level of trust with their physician. Content patients (48 %) had a moderate level of trust with their physician. Dissatisfied patients (34 %) had a life greatly affected by IBD, a low level of trust of their physician, a negative relationship with their physician, were skeptical of decisions, and did not rely on their physician for assistance. This study provides valuable insights regarding patients' perceptions of the shared decision-making process in IBD treatment using a novel moment-to-moment hybrid technology approach. Patient perspectives in this study indicate an increased desire for shared decision making in determining an optimal IBD treatment plan.

Risks associated with borrowing and sharing of prescription analgesics among patients observed by pain management physicians in Croatia: a qualitative study.

PubMed

Markotic, Filipa; Puljak, Livia

2016-01-01

Understanding and improving patient safety is a key issue in medicine. One of the potential threats to patient safety is the sharing of medication among patients, which is a form of self-medication. This study analyzed experiences and attitudes of pain management physicians (PMPs) about sharing prescription analgesics among patients. This qualitative study was conducted by semi-structured interviews among PMPs employed in Croatian pain clinics. The study involved two researchers and 15 PMPs. Among PMPs, 80% have seen patients who share their prescription analgesics with other patients for whom prescription is not intended. Most PMPs consider prescription analgesics sharing a risky and negative behavior. Some of them, however, found certain positive aspects associated to it, such as being a benevolent behavior, helping patients to get medications when they need them, and helping them cope with pain. The majority of physicians specialized in pain management encountered patients sharing prescription analgesics. Most of them considered this as risky behavior with a number of potential consequences. It has been noted that this problem is neglected and that physicians should inquire about medication sharing. Direct-to-consumers advertising was perceived as a factor contributing to such behavior. Patient education and more involvement of physicians in identifying this behavior were cited as potential remedies for preventing sharing of prescription analgesics.

The pathogenesis shared between abdominal aortic aneurysms and intracranial aneurysms: a microarray analysis.

PubMed

Wang, Wen; Li, Hao; Zhao, Zheng; Wang, Haoyuan; Zhang, Dong; Zhang, Yan; Lan, Qing; Wang, Jiangfei; Cao, Yong; Zhao, Jizong

2018-04-01

Abdominal aortic aneurysms (AAAs) and intracranial saccular aneurysms (IAs) are the most common types of aneurysms. This study was to investigate the common pathogenesis shared between these two kinds of aneurysms. We collected 12 IAs samples and 12 control arteries from the Beijing Tiantan Hospital and performed microarray analysis. In addition, we utilized the microarray datasets of IAs and AAAs from the Gene Expression Omnibus (GEO), in combination with our microarray results, to generate messenger RNA expression profiles for both AAAs and IAs in our study. Functional exploration and protein-protein interaction (PPI) analysis were performed. A total of 727 common genes were differentially expressed (404 was upregulated; 323 was downregulated) for both AAAs and IAs. The GO and pathway analyses showed that the common dysregulated genes were mainly enriched in vascular smooth muscle contraction, muscle contraction, immune response, defense response, cell activation, IL-6 signaling and chemokine signaling pathways, etc. The further protein-protein analysis identified 35 hub nodes, including TNF, IL6, MAPK13, and CCL5. These hub node genes were enriched in inflammatory response, positive regulation of IL-6 production, chemokine signaling pathway, and T/B cell receptor signaling pathway. Our study will gain new insight into the molecular mechanisms for the pathogenesis of both types of aneurysms and provide new therapeutic targets for the patients harboring AAAs and IAs.

Defense Health Care: Applying Key Management Practices Should Help Achieve Efficiencies within the Military Health System

DTIC Science & Technology

2012-04-01

5. Realign the TRICARE Management Activity and establish a Joint Military Health Service Directorate to consolidate shared services and common...Directorate to consolidate shared services and common functions Realign TRICARE Management Activity and establish a TRICARE Health Plan Agency to...Uniformed Services University of the Health Sciences, (2) TRICARE health plan, (3) Health Management Support, and (4) Shared Services division

Putting the Focus Back on the Patient: How Privacy Concerns Affect Personal Health Information Sharing Intentions.

PubMed

Abdelhamid, Mohamed; Gaia, Joana; Sanders, G Lawrence

2017-09-13

Health care providers are driven by greater participation and systemic cost savings irrespective of benefits to individual patients derived from sharing Personal Health Information (PHI). Protecting PHI is a critical issue in the sharing of health care information systems; yet, there is very little literature examining the topic of sharing PHI electronically. A good overview of the regulatory, privacy, and societal barriers to sharing PHI can be found in the 2009 Health Information Technology for Economic and Clinical Health Act. This study investigated the factors that influence individuals' intentions to share their PHI electronically with health care providers, creating an understanding of how we can represent a patient's interests more accurately in sharing settings, instead of treating patients like predetermined subjects. Unlike privacy concern and trust, patient activation is a stable trait that is not subject to change in the short term and, thus, is a useful factor in predicting sharing behavior. We apply the extended privacy model in the health information sharing context and adapt this model to include patient activation and issue involvement to predict individuals' intentions. This was a survey-based study with 1600+ participants using the Health Information National Trends Survey (HINTS) data to validate a model through various statistical techniques. The research method included an assessment of both the measurement and structural models with post hoc analysis. We find that privacy concern has the most influence on individuals' intentions to share. Patient activation, issue involvement, and patient-physician relationship are significant predictors of sharing intention. We contribute to theory by introducing patient activation and issue involvement as proxies for personal interest factors in the health care context. Overall, this study found that although patients are open to sharing their PHI, they still have concerns over the privacy of their PHI during the sharing process. It is paramount to address this factor to increase information flow and identify how patients can assure that their privacy is protected. The outcome of this study is a set of recommendations for motivating the sharing of PHI. The goal of this research is to increase the health profile of the patients by integrating the testing and diagnoses of various doctors across health care providers and, thus, bring patients closer to the physicians. ©Mohamed Abdelhamid, Joana Gaia, G Lawrence Sanders. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 13.09.2017.

Patient access to pharmaceuticals: an international comparison.

PubMed

Cohen, Joshua; Faden, Laura; Predaris, Susan; Young, Brian

2007-09-01

We have identified eight sub-dimensions of patient access to pharmaceuticals: marketing approvals, time of marketing approval, coverage, cost sharing, conditions of reimbursement, speed from marketing approval to reimbursement, extent to which beneficiaries control choice of their drug benefit, and evenness of the availability of drugs to the population. For a sample of commonly used best-selling drugs in the United States (US), we measured these eight access sub-dimensions across four health systems: France, the Netherlands, the United Kingdom (UK), and the US. Although the US approved between 15 and 18% more drugs than the other three countries, the US was slower than France and the UK to approve drugs licensed in all four countries. The percentage of drugs covered is approximately the same for all four countries. For covered drugs, we observe the least cost sharing by patients in the Netherlands. The Netherlands imposes conditions of reimbursement on a much larger percentage of drugs. France seems to be the slowest in respect of speed from marketing approval to reimbursement. The US is the most flexible in terms of the extent to which beneficiaries control their choice of drug benefit but it is the least universal in terms of evenness of the availability of drugs to the population. Our study confirms the frequently cited problems of access in European countries: lag between marketing approval and reimbursement, and inflexibility in respect of the extent to which beneficiaries control their choice of drug benefit. At the same time, our study confirms, qualitatively, different kinds of access problems in the US: relatively high patient cost sharing for pharmaceuticals, and wide variation in coverage.

Intrinsic atopic dermatitis shows similar TH2 and higher TH17 immune activation compared with extrinsic atopic dermatitis.

PubMed

Suárez-Fariñas, Mayte; Dhingra, Nikhil; Gittler, Julia; Shemer, Avner; Cardinale, Irma; de Guzman Strong, Cristina; Krueger, James G; Guttman-Yassky, Emma

2013-08-01

Atopic dermatitis (AD) is classified as extrinsic and intrinsic, representing approximately 80% and 20% of patients with the disease, respectively. Although sharing a similar clinical phenotype, only extrinsic AD is characterized by high serum IgE levels. Because most patients with AD exhibit high IgE levels, an "allergic"/IgE-mediated disease pathogenesis was hypothesized. However, current models associate AD with T-cell activation, particularly TH2/TH22 polarization, and epidermal barrier defects. We sought to define whether both variants share a common pathogenesis. We stratified 51 patients with severe AD into extrinsic AD (n = 42) and intrinsic AD (n = 9) groups (with similar mean disease activity/SCORAD scores) and analyzed the molecular and cellular skin pathology of lesional and nonlesional intrinsic AD and extrinsic AD by using gene expression (real-time PCR) and immunohistochemistry. A significant correlation between IgE levels and SCORAD scores (r = 0.76, P < 10(-5)) was found only in patients with extrinsic AD. Marked infiltrates of T cells and dendritic cells and corresponding epidermal alterations (keratin 16, Mki67, and S100A7/A8/A9) defined lesional skin of patients with both variants. However, higher activation of all inflammatory axes (including TH2) was detected in patients with intrinsic AD, particularly TH17 and TH22 cytokines. Positive correlations between TH17-related molecules and SCORAD scores were only found in patients with intrinsic AD, whereas only patients with extrinsic AD showed positive correlations between SCORAD scores and TH2 cytokine (IL-4 and IL-5) levels and negative correlations with differentiation products (loricrin and periplakin). Although differences in TH17 and TH22 activation exist between patients with intrinsic AD and those with extrinsic AD, we identified common disease-defining features of T-cell activation, production of polarized cytokines, and keratinocyte responses to immune products. Our data indicate that a TH2 bias is not the sole cause of high IgE levels in patients with extrinsic AD, with important implications for similar therapeutic interventions. Copyright © 2013 American Academy of Allergy, Asthma & Immunology. Published by Mosby, Inc. All rights reserved.

Data Extraction and Management in Networks of Observational Health Care Databases for Scientific Research: A Comparison of EU-ADR, OMOP, Mini-Sentinel and MATRICE Strategies

PubMed Central

Gini, Rosa; Schuemie, Martijn; Brown, Jeffrey; Ryan, Patrick; Vacchi, Edoardo; Coppola, Massimo; Cazzola, Walter; Coloma, Preciosa; Berni, Roberto; Diallo, Gayo; Oliveira, José Luis; Avillach, Paul; Trifirò, Gianluca; Rijnbeek, Peter; Bellentani, Mariadonata; van Der Lei, Johan; Klazinga, Niek; Sturkenboom, Miriam

2016-01-01

Introduction: We see increased use of existing observational data in order to achieve fast and transparent production of empirical evidence in health care research. Multiple databases are often used to increase power, to assess rare exposures or outcomes, or to study diverse populations. For privacy and sociological reasons, original data on individual subjects can’t be shared, requiring a distributed network approach where data processing is performed prior to data sharing. Case Descriptions and Variation Among Sites: We created a conceptual framework distinguishing three steps in local data processing: (1) data reorganization into a data structure common across the network; (2) derivation of study variables not present in original data; and (3) application of study design to transform longitudinal data into aggregated data sets for statistical analysis. We applied this framework to four case studies to identify similarities and differences in the United States and Europe: Exploring and Understanding Adverse Drug Reactions by Integrative Mining of Clinical Records and Biomedical Knowledge (EU-ADR), Observational Medical Outcomes Partnership (OMOP), the Food and Drug Administration’s (FDA’s) Mini-Sentinel, and the Italian network—the Integration of Content Management Information on the Territory of Patients with Complex Diseases or with Chronic Conditions (MATRICE). Findings: National networks (OMOP, Mini-Sentinel, MATRICE) all adopted shared procedures for local data reorganization. The multinational EU-ADR network needed locally defined procedures to reorganize its heterogeneous data into a common structure. Derivation of new data elements was centrally defined in all networks but the procedure was not shared in EU-ADR. Application of study design was a common and shared procedure in all the case studies. Computer procedures were embodied in different programming languages, including SAS, R, SQL, Java, and C++. Conclusion: Using our conceptual framework we found several areas that would benefit from research to identify optimal standards for production of empirical knowledge from existing databases.an opportunity to advance evidence-based care management. In addition, formalized CM outcomes assessment methodologies will enable us to compare CM effectiveness across health delivery settings. PMID:27014709

Shared decision-making and patient autonomy.

PubMed

Sandman, Lars; Munthe, Christian

2009-01-01

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice.

Regret in Surgical Decision Making: A Systematic Review of Patient and Physician Perspectives.

PubMed

Wilson, Ana; Ronnekleiv-Kelly, Sean M; Pawlik, Timothy M

2017-06-01

Regret is a powerful motivating factor in medical decision making among patients and surgeons. Regret can be particularly important for surgical decisions, which often carry significant risk and may have uncertain outcomes. We performed a systematic review of the literature focused on patient and physician regret in the surgical setting. A search of the English literature between 1986 and 2016 that examined patient and physician self-reported decisional regret was carried out using the MEDLINE/PubMed and Web of Science databases. Clinical studies performed in patients and physicians participating in elective surgical treatment were included. Of 889 studies identified, 73 patient studies and 6 physician studies met inclusion criteria. Among the 73 patient studies, 57.5% examined patients with a cancer diagnosis, with breast (26.0%) and prostate (28.8%) cancers being most common. Interestingly, self-reported patient regret was relatively uncommon with an average prevalence across studies of 14.4%. Factors most often associated with regret included type of surgery, disease-specific quality of life, and shared decision making. Only 6 studies were identified that focused on physician regret; 2 pertained to surgical decision making. These studies primarily measured regret of omission and commission using hypothetical case scenarios and used the results to develop decision curve analysis tools. Self-reported decisional regret was present in about 1 in 7 surgical patients. Factors associated with regret were both patient- and procedure related. While most studies focused on patient regret, little data exist on how physician regret affects shared decision making.

The Patient Experience With Shared Decision Making: A Qualitative Descriptive Study.

PubMed

Truglio-Londrigan, Marie

2015-01-01

Shared decision making is a process characterized by a partnership between a nurse and a patient. The existence of a relationship does not ensure shared decision making. Little is known about what nurses need to know and do for this experience to take place. A qualitative descriptive study was implemented using Coalizzi's method. Semistructured interviews were held with patients, and 3 themes were uncovered. The findings suggest that a nurse's conduct aimed at drawing patients in and inviting them to participate in a conversation leads toward shared decisions. Infusion nurses may find this information useful as they engage their patients in shared decisions.

Patient and Clinician Perspectives on Shared Decision-making in Early Adopting Lung Cancer Screening Programs: a Qualitative Study.

PubMed

Wiener, Renda Soylemez; Koppelman, Elisa; Bolton, Rendelle; Lasser, Karen E; Borrelli, Belinda; Au, David H; Slatore, Christopher G; Clark, Jack A; Kathuria, Hasmeena

2018-02-21

Guidelines recommend, and Medicare requires, shared decision-making between patients and clinicians before referring individuals at high risk of lung cancer for chest CT screening. However, little is known about the extent to which shared decision-making about lung cancer screening is achieved in real-world settings. To characterize patient and clinician impressions of early experiences with communication and decision-making about lung cancer screening and perceived barriers to achieving shared decision-making. Qualitative study entailing semi-structured interviews and focus groups. We enrolled 36 clinicians who refer patients for lung cancer screening and 49 patients who had undergone lung cancer screening in the prior year. Participants were recruited from lung cancer screening programs at four hospitals (three Veterans Health Administration, one urban safety net). Using content analysis, we analyzed transcripts to characterize communication and decision-making about lung cancer screening. Our analysis focused on the recommended components of shared decision-making (information sharing, deliberation, and decision aid use) and barriers to achieving shared decision-making. Clinicians varied in the information shared with patients, and did not consistently incorporate decision aids. Clinicians believed they explained the rationale and gave some (often purposely limited) information about the trade-offs of lung cancer screening. By contrast, some patients reported receiving little information about screening or its trade-offs and did not realize the CT was intended as a screening test for lung cancer. Clinicians and patients alike did not perceive that significant deliberation typically occurred. Clinicians perceived insufficient time, competing priorities, difficulty accessing decision aids, limited patient comprehension, and anticipated patient emotions as barriers to realizing shared decision-making. Due to multiple perceived barriers, patient-clinician conversations about lung cancer screening may fall short of guideline-recommended shared decision-making supported by a decision aid. Consequently, patients may be left uncertain about lung cancer screening's rationale, trade-offs, and process.

Shared decision making or paternalism in nursing consultations? A qualitative study of primary care asthma nurses’ views on sharing decisions with patients regarding inhaler device selection

PubMed Central

Upton, Jane; Fletcher, Monica; Madoc‐Sutton, Hazel; Sheikh, Aziz; Caress, Ann‐Louise; Walker, Samantha

2011-01-01

Abstract Background  Although patients with asthma would like more involvement in the decision‐making process, and UK government policy concerning chronic conditions supports shared decision making, it is not widely used in practice. Objective  To investigate how nurses approach decision making in relation to inhaler choice and long‐term inhaler use within a routine asthma consultation and to better understand the barriers and facilitators to shared decision making in practice. Setting and participants  Semi‐structured interviews were conducted with post‐registration, qualified nurses who routinely undertook asthma consultations and were registered on a respiratory course. Interviews were recorded, transcribed and analysed using the Framework approach. Results  Twenty participants were interviewed. Despite holding positive views about shared decision making, limited shared decision making was reported. Opportunities for patients to share decisions were only offered in relation to inhaler device, which were based on the nurse’s pre‐selected recommendations. Giving patients this ‘choice’ was seen as key to improving adherence. Discussion  There is a discrepancy between nurses’ understanding of shared decision making and the depictions of shared decision making presented in the academic literature and NHS policy. In this study, shared decision making was used as a tool to support the nurses’ agenda, rather than as a natural expression of equality between the nurse and patient. Conclusion  There is a misalignment between the goals of practice nurses and the rhetoric regarding patient empowerment. Shared decision making may therefore only be embraced if it improves patient outcomes. This study indicates attitudinal shifts and improvements in knowledge of ‘shared decision‐making’ are needed if policy dictates are to be realised. PMID:21323822

Reflections: The Value of Patient Support Groups.

PubMed

Hu, Amanda

2017-04-01

A patient support group is defined as "a group of people with common experiences and concerns who provide emotional and moral support for one another." Support groups fulfill many functions: educating patients/family, sharing the illness experience, providing strength to its members, raising public awareness, and fundraising. Some research has shown an improvement in quality of life of patients with head and neck cancer who have participated in support groups. A wide variety of support groups are available for otolaryngology patients, ranging from head and neck oncology to tinnitus and spasmodic dysphonia. Some support groups are face-to-face, while others use social media and the Internet. Surprisingly, engagement in patient support groups is low-about 10%. Some barriers to accessing support groups are awareness, time constraints, and confrontation of negative aspects of the disease. As otolaryngologists, we can help our patients access support groups so that they can benefit from these resources.

Avoidant personality disorder and taijin kyoufu: sociocultural implications of the WHO/ADAMHA International Study of Personality Disorders in Japan.

PubMed

Ono, Y; Yoshimura, K; Sueoka, R; Yamauchi, K; Mizushima, H; Momose, T; Nakamura, K; Okonogi, K; Asai, M

1996-03-01

This paper discusses the characteristics of avoidant personality disorder in a cultural context based on the Japanese concept of taijin kyoufu as well as that of DSM-III-R and DSM-IV social phobia. Sixty-six patients were given the International Personality Disorder Examination and questionnaires including the Beck Anxiety Inventory. Among the 23 DSM-III-R personality disorder patients, 8 patients were diagnosed as having avoidant personality disorder. Six of them were suffering from taijin kyoufu symptoms. Among 27 ICD personality disorder patients, 22 patients were diagnosed as having ICD anxious personality disorder. All DSM avoidant patients were included in the ICD anxious group. These findings suggest that patients with avoidant personality disorder have had a long history of difficulties and share common personality problems with a milder form of taijin kyoufu, which is conceptually different from social phobia.

Discovering the truth in attempted suicide.

PubMed

Michel, Konrad; Maltsberger, John T; Jobes, David A; Leenaars, Antoon A; Orbach, Israel; Stadler, Kathrin; Dey, Pascal; Young, Richard A; Valach, Ladislav

2002-01-01

The findings of an international workshop on improving clinical interactions between mental health workers and suicidal patients are reported. Expert clinician-researchers identified common contemporary problems in interviews of suicide attempters. Various videotaped interviews of suicide attempters were critically discussed in relation to expert experience and the existing literature in this area. The working group agreed that current mental health practice often does not take into account the subjective experience of patients attempting suicide, and that contemporary clinical assessments of suicidal behavior are more clinician-centered than patient-centered. The group concluded that clinicians should strive for a shared understanding of the patient's suicidality; and that interviewers should be more aware of the suicidal patient's inner experience of mental pain and loss of self-respect. Collaborative and narrative approaches to the suicidal patient are more promising, enhancing the clinician's ability to empathize and help the patient begin to reestablish a sense of mastery, thereby strengthening the clinical alliance.

Promoting Shared Decision Making in Disorders of Sex Development (DSD): Decision Aids and Support Tools.

PubMed

Siminoff, L A; Sandberg, D E

2015-05-01

Specific complaints and grievances from adult patients with disorders of sex development (DSD), and their advocates center around the lack of information or misinformation they were given about their condition and feeling stigmatized and shamed by the secrecy surrounding their condition and its management. Many also attribute poor sexual function to damaging genital surgery and/or repeated, insensitive genital examinations. These reports suggest the need to reconsider the decision-making process for the treatment of children born with DSD. This paper proposes that shared decision making, an important concept in adult health care, be operationalized for the major decisions commonly encountered in DSD care and facilitated through the utilization of decision aids and support tools. This approach may help patients and their families make informed decisions that are better aligned with their personal values and goals. It may also lead to greater confidence in decision making with greater satisfaction and less regret. A brief review of the past and current approach to DSD decision making is provided, along with a review of shared decision making and decision aids and support tools. A case study explores the need and potential utility of this suggested new approach. © Georg Thieme Verlag KG Stuttgart · New York.

A shared computer-based problem-oriented patient record for the primary care team.

PubMed

Linnarsson, R; Nordgren, K

1995-01-01

1. INTRODUCTION. A computer-based patient record (CPR) system, Swedestar, has been developed for use in primary health care. The principal aim of the system is to support continuous quality improvement through improved information handling, improved decision-making, and improved procedures for quality assurance. The Swedestar system has evolved during a ten-year period beginning in 1984. 2. SYSTEM DESIGN. The design philosophy is based on the following key factors: a shared, problem-oriented patient record; structured data entry based on an extensive controlled vocabulary; advanced search and query functions, where the query language has the most important role; integrated decision support for drug prescribing and care protocols and guidelines; integrated procedures for quality assurance. 3. A SHARED PROBLEM-ORIENTED PATIENT RECORD. The core of the CPR system is the problem-oriented patient record. All problems of one patient, recorded by different members of the care team, are displayed on the problem list. Starting from this list, a problem follow-up can be made, one problem at a time or for several problems simultaneously. Thus, it is possible to get an integrated view, across provider categories, of those problems of one patient that belong together. This shared problem-oriented patient record provides an important basis for the primary care team work. 4. INTEGRATED DECISION SUPPORT. The decision support of the system includes a drug prescribing module and a care protocol module. The drug prescribing module is integrated with the patient records and includes an on-line check of the patient's medication list for potential interactions and data-driven reminders concerning major drug problems. Care protocols have been developed for the most common chronic diseases, such as asthma, diabetes, and hypertension. The patient records can be automatically checked according to the care protocols. 5. PRACTICAL EXPERIENCE. The Swedestar system has been implemented in a primary care area with 30,000 inhabitants. It is being used by all the primary care team members: 15 general practitioners, 25 district nurses, and 10 physiotherapists. Several years of practical experience of the CPR system shows that it has a positive impact on quality of care on four levels: 1) improved clinical follow-up of individual patients; 2) facilitated follow-up of aggregated data such as practice activity analysis, annual reports, and clinical indicators; 3) automated medical audit; and 4) concurrent audit. Within that primary care area, quality of care has improved substantially in several aspects due to the use of the CPR system [1].

Multimorbidity and healthcare utilisation among high-cost patients in the US Veterans Affairs Health Care System.

PubMed

Zulman, Donna M; Pal Chee, Christine; Wagner, Todd H; Yoon, Jean; Cohen, Danielle M; Holmes, Tyson H; Ritchie, Christine; Asch, Steven M

2015-04-16

To investigate the relationship between multimorbidity and healthcare utilisation patterns among the highest cost patients in a large, integrated healthcare system. In this retrospective cross-sectional study of all patients in the U.S. Veterans Affairs (VA) Health Care System, we aggregated costs of individuals' outpatient and inpatient care, pharmacy services and VA-sponsored contract care received in 2010. We assessed chronic condition prevalence, multimorbidity as measured by comorbidity count, and multisystem multimorbidity (number of body systems affected by chronic conditions) among the 5% highest cost patients. Using multivariate regression, we examined the association between multimorbidity and healthcare utilisation and costs, adjusting for age, sex, race/ethnicity, marital status, homelessness and health insurance status. USA VA Health Care System. 5.2 million VA patients. Annual total costs; absolute and share of costs generated through outpatient, inpatient, pharmacy and VA-sponsored contract care; number of visits to primary, specialty and mental healthcare; number of emergency department visits and hospitalisations. The 5% highest cost patients (n=261,699) accounted for 47% of total VA costs. Approximately two-thirds of these patients had chronic conditions affecting ≥3 body systems. Patients with cancer and schizophrenia were less likely to have documented comorbid conditions than other high-cost patients. Multimorbidity was generally associated with greater outpatient and inpatient utilisation. However, increased multisystem multimorbidity was associated with a higher outpatient share of total costs (1.6 percentage points per affected body system, p<0.01) but a lower inpatient share of total costs (-0.6 percentage points per affected body system, p<0.01). Multisystem multimorbidity is common among high-cost VA patients. While some patients might benefit from disease-specific programmes, for most patients with multimorbidity there is a need for interventions that coordinate and maximise efficiency of outpatient services across multiple conditions. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Resisting Prescribed Opioids: A Qualitative Study of Decision Making in Patients Taking Opioids for Chronic Noncancer Pain.

PubMed

Paterson, Charlotte; Ledgerwood, Kay; Arnold, Carolyn; Hogg, Malcolm; Xue, Charlie; Zheng, Zhen

2016-04-01

Opioids are increasingly prescribed for chronic noncancer pain across the developed world. Clinical guidelines for management of these patients focus on over-use. However, research into other types of long-term medication indicates that many patients minimize drug use whenever possible. To identify the varying influences on patients' decisions about their use of prescribed opioids and explore whether concepts of resistance and minimization of intake apply to these patients. A multiprofessional team performed a qualitative interview study using the constant-comparative method. Patient's decision making was explored in depth and with a thematic analysis utilizing a published "Model of medicine-taking." A purposive sample of 20 participants drawn from two pain clinics in Melbourne, Australia. The sample was biased toward patients interested in nonmedication pain management options. Patients' needs to obtain relief from severe pain, maintain function, and minimize side effects could lead to under-use as well as over-use of prescribed opioids. In keeping with the published Model of medicine-taking, resistance to taking opioids was a common and important influence on behavior. In the face of severe chronic pain, many participants used a variety of strategies to evaluate, avoid, reduce, self-regulate, and replace opioids. Furthermore, participants perceived a resistance to opioids within the system and among some healthcare professionals. This sometimes adversely affected their adherence. Both patients and doctors exhibit aspects of resistance to the use of prescribed opioids for chronic noncancer pain, suggesting that this shared concern could be the basis of a productive therapeutic alliance to improve communication and shared decision making. Clinical guidelines for opioids use for chronic noncancer pain focus on over-use. Our qualitative interview study found that many patients resisted and minimized the use of opioids. Using a published "Model of medicine-taking," we identified various influences on patient decision making. Both patients and doctors had concerns about using opioids for chronic noncancer pain. These could be the basis of a productive therapeutic alliance to improve communication and shared decision making. © 2015 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Chaotic Dynamics and Application of LCR Oscillators Sharing Common Nonlinearity

NASA Astrophysics Data System (ADS)

Jeevarekha, A.; Paul Asir, M.; Philominathan, P.

2016-06-01

This paper addresses the problem of sharing common nonlinearity among nonautonomous and autonomous oscillators. By choosing a suitable common nonlinear element with the driving point characteristics capable of bringing out chaotic motion in a combined system, we obtain identical chaotic states. The dynamics of the coupled system is explored through numerical and experimental studies. Employing the concept of common nonlinearity, a simple chaotic communication system is modeled and its performance is verified through Multisim simulation.

Share 35 Changes Center Level Liver Acceptance Practices

PubMed Central

Goldberg, David S.; Levine, Matthew; Karp, Seth; Gilroy, Richard; Peter, L

2017-01-01

Share 35 was implemented to provide improved access to organs for patients with MELD scores ≥35. However, little is known about the impact of Share 35 on organ offer acceptance rates. We evaluated all liver offers to adult patients that were ultimately transplanted between 1/1/2011–12/31/2015. The analyses focused on patients ranked in the top five positions of a given match run, and used multi-level mixed-effects models, clustering on individual waitlist candidate and transplant center. There was a significant interaction between Share 35 era and MELD category (p<0.001). Comparing offers to MELD score ≥35 patients, offers post-Share 35 were 36% less likely to be accepted compared to offers to MELD score ≥35 patients pre-Share 35 (adjusted OR: 0.64). There was no clinically meaningful difference in the DRI of livers that were declined for patients with an allocation MELD score ≥35 in the pre- vs post-Share 35 era. Organ offer acceptance rates for patients with an allocation MELD≥35 decreased in every region post-Share 35; the magnitude of these changes was bigger in regions 2, 3, 4, 5, 6, 7, and 11, compared to regions 8 and 9 that had regional sharing in place pre-Share 35. There were significant changes in organ offer acceptance rates at the center level pre- vs post-Share 35, and these changes varied across centers (p<0.001). Conclusions In liver transplant candidates achieving a MELD score ≥35, liver acceptance of offers declined significantly after implementation of Share 35. The alterations in behavior at the center level suggest that practice patterns changed as a direct result of Share 35. Changes in organ acceptance under even broader organ sharing (redistricting) would likely be even greater, posing major logistical and operational challenges, while potentially increasing discard rates, thus decreasing the total number of transplant nationally. PMID:28240804

Experiences and perspectives on the GIST patient journey.

PubMed

Macdonald, Nancy; Shapiro, Ari; Bender, Christina; Paolantonio, Marc; Coombs, John

2012-01-01

The tyrosine kinase inhibitor (TKI) imatinib has improved outcomes for patients with unresectable or metastatic gastrointestinal stromal tumors (GIST), and for patients receiving adjuvant therapy following GIST resection. This qualitative study explored the experiences and emotions of patients through GIST diagnosis, treatment initiation, disease control, and in some patients, loss of response and therapy switch. Ethnographic investigations were conducted, including semi- structured qualitative interviews of patients with resected or metastatic/unresectable GIST and their caregivers, from Canada (n = 15); the United States (n = 10); and Brazil, France, Germany, Russia, and Spain (n = 5 each). Some interviewees also kept 7-day photo journals. Responses were qualitatively analyzed to identify gaps and unmet needs where communication about disease, treatments, and adherence could be effective. Patients shared common experiences during each stage of disease management (crisis, hope, adaptation, new normal, and uncertainty). Patients felt a sense of crisis during diagnosis, followed by hope upon TKI therapy initiation. Over time, they came to adapt to their new lives (new normal) with cancer. With each follow-up, patients confronted the uncertainty of becoming TKI resistant and the possible need to switch therapy. During uncertainty many patients sought new information regarding GIST. Cases of disease progression and drug switching caused patients to revert to crisis and restart their emotional journey. Patients with primary or unresectable/metastatic GIST shared similar journeys, especially regarding uncertainty, although differences in the scope and timing of phases were observed. Strategies patients used to remain adherent included obtaining family support, setting reminder mechanisms, taking medicine at routine times, and storing medicine in prominent places. Physicians and support staff can manage patient expectations and encourage adherence to therapy, which may facilitate optimal patient outcomes. Patient education about current GIST developments and adherence across all phases of the patient journey are of benefit.

[A model for shared decision-making with frail older patients: consensus reached using Delphi technique].

PubMed

van de Pol, M H J; Fluit, C R M G; Lagro, J; Lagro-Janssen, A L M; Olde Rikkert, M G M

2017-01-01

To develop a model for shared decision-making with frail older patients. Online Delphi forum. We used a three-round Delphi technique to reach consensus on the structure of a model for shared decision-making with older patients. The expert panel consisted of 16 patients (round 1), and 59 professionals (rounds 1-3). In round 1, the panel of experts was asked about important steps in the process of shared decision-making and the draft model was introduced. Rounds 2 and 3 were used to adapt the model and test it for 'importance' and 'feasibility'. Consensus for the dynamic shared decision-making model as a whole was achieved for both importance (91% panel agreement) and feasibility (76% panel agreement). Shared decision-making with older patients is a dynamic process. It requires a continuous supportive dialogue between health care professional and patient.

Pastoral research: past, present, and future.

PubMed

Gleason, John J

2004-01-01

In healthcare environments of excellence, clinically trained chaplains are valued members of the medical treatment team. There are skills and values they hold in common with medicine and allied health disciplines: enhancing the health and well-being of the patient as a unity of body, mind, and spirit within a unique family and cultural system. This article examines the past, present, and future of pastoral research, including the chaplain's moral imperative to examine practice and to share what is found.

Stroke and Chronic Kidney Disease: Epidemiology, Pathogenesis, and Management Across Kidney Disease Stages

PubMed Central

Weiner, Daniel E.; Dad, Taimur

2015-01-01

Summary Cerebrovascular disease and stroke are very common at all stages of chronic kidney disease (CKD), likely representing both shared risk factors as well as synergy among risk factors. More subtle ischemic brain lesions may be particularly common in the CKD population, with subtle manifestations including cognitive impairment. For individuals with nondialysis CKD, the prevention, approach to, diagnosis, and management of stroke is similar to the general, non-CKD population. For individuals with end-stage renal disease, far less is known regarding the prevention of stroke. Stroke prophylaxis using warfarin in dialysis patients with atrial fibrillation in particular remains of uncertain benefit. End-stage renal disease patients can be managed aggressively in the setting of acute stroke. Outcomes after stroke at all stages of CKD are poor, and improving these outcomes should be the subject of future clinical trials. PMID:26355250

Developing patient-centered teams: The role of sharing stories about patients and patient care.

PubMed

Bennett, Ariana H; Hassinger, Jane A; Martin, Lisa A; Harris, Lisa H; Gold, Marji

2015-09-01

Research indicates that health care teams are good for staff, patients, and organizations. The characteristics that make teams effective include shared objectives, mutual respect, clarity of roles, communication, trust, and collaboration. We were interested in examining how teams develop these positive characteristics. This paper explores the role of sharing stories about patients in developing patient-centered teams. Data for this paper came from 1 primary care clinic as part of a larger Providers Share Workshop study conducted by the University of Michigan. Each workshop included 5 facilitated group sessions in which staff met to talk about their work. This paper analyzes qualitative data from the workshops. Through an iterative process, research team members identified major themes, developed a coding scheme, and coded transcripts for qualitative data analysis. One of the most powerful ways group members connected was through sharing stories about their patients. Sharing clinical cases and stories helped participants bond around their shared mission of patient-centered care, build supportive relationships, enhance compassion for patients, communicate and resolve conflict, better understand workflows and job roles, develop trust, and increase morale. These attributes highlighted by participants correspond to those documented in the literature as important elements of teambuilding and key indicators of team effectiveness. The sharing of stories about patients seems to be a promising tool for positive team development in a primary care clinical setting and should be investigated further. (c) 2015 APA, all rights reserved).

Religious and spiritual resources, CAM, and conventional treatment in the lives of cancer patients.

PubMed

Tatsumura, Yvonne; Maskarinec, Gertraud; Shumay, Dianne M; Kakai, Hisako

2003-01-01

In addition to seeking conventional treatment from physicians, cancer patients will often use religious and spiritual resources (RSR) and complementary and alternative medicine (CAM). Patients' beliefs about the relationships among RSR, CAM, and conventional treatments may reflect belief systems not readily apparent to physicians. 1) Identify the RSR used and explore themes in beliefs regarding RSR, CAM, and conventional treatment. 2) Investigate the nature of the relationships among RSR, CAM, and conventional treatment in the lives of cancer patients. Cancer patients in Hawaii were recruited from a group who had previously completed a questionnaire on CAM use. In-depth interviews were conducted with a selected subset of survey participants. 143 cancer patients were interviewed 2 to 3 years following diagnosis. Participants reported using a variety of RSR, including personal faith, individual (self) prayer, relationship/dialog with God, prayers from fellow church members and others, counseling from pastor/priest or leader of faith, reading the bible, attending religious services, meditation, finding and spending time at locations of spiritual energy (i.e., churches, specific geographical locations, or certain natural settings), and help or counseling by ancestor(s). They also expressed beliefs that RSR, CAM, and conventional treatment have both shared and distinct purposes. RSR themes included providing treatment or cure, supporting treatment or cure, and being part of life. CAM themes included providing treatment or cure, supporting treatment or cure, preventing cancer and recurrence, substitution for conventional treatment, and as a last resort. Participants believed the purposes of conventional treatment were to fight/cure cancer and to improve quality of life. RSR, CAM, and conventional treatment served both spiritual and physical purposes. When participants perceived a relationship between RSR, CAM, and conventional treatment, it reflected shared spiritual and physical purposes. Such associations were especially strong when RSR, CAM, and conventional treatment shared the common goals of providing treatment or cure and/or supporting treatment or cure. Perceptions of shared purpose were individual to each participant, with religious congruence and life history playing a role in beliefs about the relationship between RSR and CAM. Such beliefs can affect issues of control, spiritual well-being, coping, depression, decision-making, and possibly health outcomes in cancer patients. Therefore, they should be addressed by clinicians in discussions with their patients.

Overcoming Barriers to Integrating Behavioral Health and Primary Care Services

PubMed Central

Grazier, Kyle L.; Smiley, Mary L.; Bondalapati, Kirsten S.

2016-01-01

Objective: Despite barriers, organizations with varying characteristics have achieved full integration of primary care services with providers and services that identify, treat, and manage those with mental health and substance use disorders. What are the key factors and common themes in stories of this success? Methods: A systematic literature review and snowball sampling technique was used to identify organizations. Site visits and key informant interviews were conducted with 6 organizations that had over time integrated behavioral health and primary care services. Case studies of each organization were independently coded to identify traits common to multiple organizations. Results: Common characteristics include prioritized vulnerable populations, extensive community collaboration, team approaches that included the patient and family, diversified funding streams, and data-driven approaches and practices. Conclusions: While significant barriers to integrating behavioral health and primary care services exist, case studies of organizations that have successfully overcome these barriers share certain common factors. PMID:27380923

The Effect of Shared Information on Pilot/Controller Situation Awareness and Re-Route Negotiation

NASA Technical Reports Server (NTRS)

Farley, Todd C.; Hansman, R. John; Endsley, Mica R.; Amonlirdviman, Keith; Vigeant-Langlois, Laurence

1998-01-01

The effect of shared information is assessed in terms of pilot/controller negotiation and shared situation awareness. Pilot goals and situation awareness requirements are developed and compared against those of air traffic controllers to identify areas of common and competing interest. A part-task simulator experiment is described which probes pilot/controller interaction in areas where common information has the potential to lead to contention, as identified in the comparative analysis. Preliminary results are presented which suggest that shared information can effect more collaborative interaction between pilots and air traffic controllers.

The Use of Online Health Forums by Patients With Chronic Cough: Qualitative Study

PubMed Central

Porter, Tom; Wilson, Andrew

2018-01-01

Background Online health discussion forums are used by different patient groups for sharing advice and information. Chronic cough is a common problem, and people with chronic cough use online health forums alongside formal medical therapies. Objective The objective of this study was to assess how chronic cough sufferers use online health forums, including the treatment advice they share with one another and the possible clinical uses of online forums in chronic cough. Methods Three open-access health forums were searched for threads related to chronic cough. Identified threads were screened against inclusion and exclusion criteria adapted from the British Thoracic Society (BTS) Guidelines related to chronic cough diagnosis. Included data were subjected to qualitative thematic analysis. All study data were cross-validated by a second author and discrepancies were resolved. Results In total, 96 threads were included in the analysis, consisting of posts by 223 forum users. Three main themes were identified: the effect of chronic cough on the lives of patients, the treatment advice shared between users, and the provision of support within forums. Conclusions Chronic cough symptoms had impacts on multiple aspects of patients’ health and well-being. To try and combat these issues, forum users suggested a variety of treatments to one another, ranging from mainstream traditional therapies to odd alternative remedies. The provision of support and empathy were also prominent themes in discussion threads. Online forums themselves may provide increasing benefit to users through the addition of a moderator. PMID:29367181

[Cancer screening in clinical practice: the value of shared decision-making].

PubMed

Cornuz, Jacques; Junod, Noëlle; Pasche, Olivier; Guessous, Idris

2010-07-14

Shared decision-making approach to uncertain clinical situations such as cancer screening seems more appropriate than ever. Shared decision making can be defined as an interactive process where physician and patient share all the stages of the decision making process. For patients who wish to be implicated in the management of their health conditions, physicians might express difficulty to do so. Use of patient decision aids appears to improve such process of shared decision making.

77 FR 69693 - Submission for OMB Review; Comment Request

Federal Register 2010, 2011, 2012, 2013, 2014

2012-11-20

... collection activities at national conferences will use identical methodologies or otherwise share a common element. Similarly, the BEP's scientific studies will use very similar methodologies or share a common... conducting scientific tests. Using those methodologies, the BEP or its contracted specialists will conduct...

Genomic Data Commons | Office of Cancer Genomics

Cancer.gov

The NCI’s Center for Cancer Genomics launches the Genomic Data Commons (GDC), a unified data sharing platform for the cancer research community. The mission of the GDC is to enable data sharing across the entire cancer research community, to ultimately support precision medicine in oncology.

Multidisciplinary teams, and parents, negotiating common ground in shared-care of children with long-term conditions: A mixed methods study

PubMed Central

2013-01-01

Background Limited negotiation around care decisions is believed to undermine collaborative working between parents of children with long-term conditions and professionals, but there is little evidence of how they actually negotiate their respective roles. Using chronic kidney disease as an exemplar this paper reports on a multi-method study of social interaction between multidisciplinary teams and parents as they shared clinical care. Methods Phases 1 and 2: a telephone survey mapping multidisciplinary teams’ parent-educative activities, and qualitative interviews with 112 professionals (Clinical-psychologists, Dietitians, Doctors, Nurses, Play-specialists, Pharmacists, Therapists and Social-workers) exploring their accounts of parent-teaching in the 12 British children’s kidney units. Phase 3: six ethnographic case studies in two units involving observations of professional/parent interactions during shared-care, and individual interviews. We used an analytical framework based on concepts drawn from Communities of Practice and Activity Theory. Results Professionals spoke of the challenge of explaining to each other how they are aware of parents’ understanding of clinical knowledge, and described three patterns of parent-educative activity that were common across MDTs: Engaging parents in shared practice; Knowledge exchange and role negotiation, and Promoting common ground. Over time, professionals had developed a shared repertoire of tools to support their negotiations with parents that helped them accomplish common ground during the practice of shared-care. We observed mutual engagement between professionals and parents where a common understanding of the joint enterprise of clinical caring was negotiated. Conclusions For professionals, making implicit knowledge explicit is important as it can provide them with a language through which to articulate more clearly to each other what is the basis of their intuition-based hunches about parents’ support needs, and may help them to negotiate with parents and accelerate parents’ learning about shared caring. Our methodology and results are potentially transferrable to shared management of other conditions. PMID:23835151

The Geography of Recent Genetic Ancestry across Europe

PubMed Central

Ralph, Peter; Coop, Graham

2013-01-01

The recent genealogical history of human populations is a complex mosaic formed by individual migration, large-scale population movements, and other demographic events. Population genomics datasets can provide a window into this recent history, as rare traces of recent shared genetic ancestry are detectable due to long segments of shared genomic material. We make use of genomic data for 2,257 Europeans (in the Population Reference Sample [POPRES] dataset) to conduct one of the first surveys of recent genealogical ancestry over the past 3,000 years at a continental scale. We detected 1.9 million shared long genomic segments, and used the lengths of these to infer the distribution of shared ancestors across time and geography. We find that a pair of modern Europeans living in neighboring populations share around 2–12 genetic common ancestors from the last 1,500 years, and upwards of 100 genetic ancestors from the previous 1,000 years. These numbers drop off exponentially with geographic distance, but since these genetic ancestors are a tiny fraction of common genealogical ancestors, individuals from opposite ends of Europe are still expected to share millions of common genealogical ancestors over the last 1,000 years. There is also substantial regional variation in the number of shared genetic ancestors. For example, there are especially high numbers of common ancestors shared between many eastern populations that date roughly to the migration period (which includes the Slavic and Hunnic expansions into that region). Some of the lowest levels of common ancestry are seen in the Italian and Iberian peninsulas, which may indicate different effects of historical population expansions in these areas and/or more stably structured populations. Population genomic datasets have considerable power to uncover recent demographic history, and will allow a much fuller picture of the close genealogical kinship of individuals across the world. PMID:23667324

Multidisciplinary teams, and parents, negotiating common ground in shared-care of children with long-term conditions: a mixed methods study.

PubMed

Swallow, Veronica M; Nightingale, Ruth; Williams, Julian; Lambert, Heather; Webb, Nicholas J A; Smith, Trish; Wirz, Lucy; Qizalbash, Leila; Crowther, Laura; Allen, Davina

2013-07-08

Limited negotiation around care decisions is believed to undermine collaborative working between parents of children with long-term conditions and professionals, but there is little evidence of how they actually negotiate their respective roles. Using chronic kidney disease as an exemplar this paper reports on a multi-method study of social interaction between multidisciplinary teams and parents as they shared clinical care. Phases 1 and 2: a telephone survey mapping multidisciplinary teams' parent-educative activities, and qualitative interviews with 112 professionals (Clinical-psychologists, Dietitians, Doctors, Nurses, Play-specialists, Pharmacists, Therapists and Social-workers) exploring their accounts of parent-teaching in the 12 British children's kidney units. Phase 3: six ethnographic case studies in two units involving observations of professional/parent interactions during shared-care, and individual interviews. We used an analytical framework based on concepts drawn from Communities of Practice and Activity Theory. Professionals spoke of the challenge of explaining to each other how they are aware of parents' understanding of clinical knowledge, and described three patterns of parent-educative activity that were common across MDTs: Engaging parents in shared practice; Knowledge exchange and role negotiation, and Promoting common ground. Over time, professionals had developed a shared repertoire of tools to support their negotiations with parents that helped them accomplish common ground during the practice of shared-care. We observed mutual engagement between professionals and parents where a common understanding of the joint enterprise of clinical caring was negotiated. For professionals, making implicit knowledge explicit is important as it can provide them with a language through which to articulate more clearly to each other what is the basis of their intuition-based hunches about parents' support needs, and may help them to negotiate with parents and accelerate parents' learning about shared caring. Our methodology and results are potentially transferrable to shared management of other conditions.

Shared Decision Making Interventions: Theoretical and Empirical Evidence with Implications for Health Literacy.

PubMed

Stacey, Dawn; Hill, Sophie; McCaffery, Kirsten; Boland, Laura; Lewis, Krystina B; Horvat, Lidia

2017-01-01

Basic health literacy is required for making health decisions. The aim of this chapter is to discuss the use of shared decision making interventions for supporting patient involvement in making health decisions. The chapter provides a definition of shared decision making and discusses the link between shared decision making and the three levels of health literacy: functional, communicative/interactive, and critical. The Interprofessional Shared Decision Making Model is used to identify the various players involved: the patient, the family/surrogate/significant others, decision coach, and health care professionals. When patients are involved in shared decision making, they have better health outcomes, better healthcare experiences, and likely lower costs. Yet, their degree of involvement is influenced by their level of health literacy. Interventions to facilitate shared decision making are patient decision aids, decision coaching, and question prompt lists. Patient decision aids have been shown to improve knowledge, accurate risk perceptions, and chosen options congruent with patients' values. Decision coaching improves knowledge and patient satisfaction. Question prompts also improve satisfaction. When shared decision making interventions have been evaluated with patients presumed to have lower health literacy, they appeared to be more beneficial to disadvantaged groups compared to those with higher literacy or better socioeconomic status. However, special attention needs to be applied when designing these interventions for populations with lower literacy. Two case exemplars are provided to illustrate the design and choice of interventions to better support patients with varying levels of health literacy. Despite evidence indicating these interventions are effective for involving patients in shared decision making, few are used in routine clinical practice. To increase their uptake, implementation strategies need to overcome barriers interfering with their use. Implementation strategies include training health care professionals, adopting SDM interventions that target patients, such as patient decision aids, and monitor patients' decisional comfort using the SURE test. Integrating health literacy principles is important when developing interventions that facilitate shared decision making and essential to avoid inadvertently producing higher inequalities between patients with varying levels of health literacy.

A qualitative systematic review of internal and external influences on shared decision-making in all health care settings.

PubMed

Truglio-Londrigan, Marie; Slyer, Jason T; Singleton, Joanne K; Worral, Priscilla

The objective of this review is to identify and synthesize the best available evidence related to the meaningfulness of internal and external influences on shared-decision making for adult patients and health care providers in all health care settings.The specific questions to be answered are: BACKGROUND: Patient-centered care is emphasized in today's healthcare arena. This emphasis is seen in the works of the International Alliance of Patients' Organizations (IAOP) who describe patient-centered healthcare as care that is aimed at addressing the needs and preferences of patients. The IAOP presents five principles which are foundational to the achievement of patient-centered healthcare: respect, choice, policy, access and support, as well as information. These five principles are further described as:Within the description of these five principles the idea of shared decision-making is clearly evident.The concept of shared decision-making began to appear in the literature in the 1990s. It is defined as a "process jointly shared by patients and their health care provider. It aims at helping patients play an active role in decisions concerning their health, which is the ultimate goal of patient-centered care." The details of the shared decision-making process are complex and consist of a series of steps including:Three overall representative decision-making models are noted in contemporary literature. These three models include: paternalistic, informed decision-making, and shared decision-making. The paternalistic model is an autocratic style of decision-making where the healthcare provider carries out the care from the perspective of knowing what is best for the patient and therefore makes all decisions. The informed decision-making model takes place as the information needed to make decisions is conveyed to the patient and the patient makes the decisions without the healthcare provider involvement. Finally, the shared decision-making model is representative of a sharing and a negotiation towards treatment decisions. Thus, these models represent a range with patient non-participation at one end of the continuum to informed decision making or a high level of patient power at the other end. Several shared decision-making models focus on the process of shared decision-making previously noted. A discussion of several process models follows below.Charles et al. depicts a process model of shared decision-making that identifies key characteristics that must be in evidence. The patient shares in the responsibility with the healthcare provider in this model. The key characteristics included:This model illustrates that there must be at least two individuals participating, however, family and friends may be involved in a variety of roles such as the collector of information, the interpreter of this information, coach, advisor, negotiator, and caretaker. This model also depicts the need to take steps to participate in the shared decision-making process. To take steps means that there is an agreement between and among all involved that shared decision-making is necessary and preferred. Research about patient preferences, however, offers divergent views. The link between patient preferences for shared decision-making and the actuality of shared decision-making in practice is not strong. Research concerning patients and patient preferences on shared decision-making points to variations depending on age, education, socio-economic status, culture, and diagnosis. Healthcare providers may also hold preferences for shared decision-making; however, research in this area is not as comprehensive as is patient focused research. Elwyn et al. explored the views of general practice providers on involving patients in decisions. Both positive and negative views were identified ranging from receptive, noting potential benefits, to concern for the unrealistic nature of participation and sharing in the decision-making process. An example of this potential difficulty, from a healthcare provider perspective, is identifying the potential conflict that may develop when a patient's preference is different from clinical practice guidelines. This is further exemplified in healthcare encounters when a situation may not yield itself to a clear answer but rather lies in a grey area. These situations are challenging for healthcare providers.The notion of information sharing as a prerequisite to shared decision-making offers insight into another process. The healthcare provider must provide the patient the information that they need to know and understand in order to even consider and participate in the shared decision-making process. This information may include the disease, potential treatments, consequences of those treatments, and any alternatives, which may include the decision to do nothing. Without knowing this information the patient will not be able to participate in the shared decision-making process. The complexity of this step is realized if one considers what the healthcare provider needs to know in order to first assess what the patient knows and does not know, the readiness of the patient to participate in this educational process and learn the information, as well as, the individual learning styles of the patient taking into consideration the patient's ideas, values, beliefs, education, culture, literacy, and age. Depending on the results of this assessment the health care provider then must communicate the information to the patient. This is also a complex process that must take into consideration the relationship, comfort level, and trust between the healthcare provider and the patient.Finally, the treatment decision is reached between both the healthcare provider and the patient. Charles et al. portrays shared decision-making as a process with the end product, the shared decision, as the outcome. This outcome may be a decision as to the agreement of a treatment decision, no agreement reached as to a treatment decision, and disagreement as to a treatment decision. Negotiation is a part of the process as the "test of a shared decision (as distinct from the decision-making process) is if both parties agree on the treatment option."Towle and Godolphin developed a process model that further exemplifies the role of the healthcare provider and the patient in the shared decision-making process as mutual partners with mutual responsibilities. The capacity to engage in this shared decision-making rests, therefore, on competencies including knowledge, skills, and abilities for both the healthcare provider and the patient. This mutual partnership and the corresponding competencies are presented for both the healthcare provider and the patient in this model. The competencies noted for the healthcare provider for shared decision making include:Patient competencies include:This model illustrates the shared decision-making process with emphasis on the role of the healthcare provider and the patient very similar to the prior model. This model, however, gives greater emphasis to the process of the co-participation of the healthcare provider and the patient. The co-participation depicts a mutual partnership with mutual responsibilities that can be seen as "reciprocal relationships of dialogue." For this to take place the relationship between and among the participants of the shared decision-making process is important along with other internal and external influences such as communication, trust, mutual respect, honesty, time, continuity, and commitment. Cultural, social, and age group differences; evidence; and team and family are considered within this model.Elwyn et al. presents yet another model that depicts the shared decision-making process; however, this model offers a view where the healthcare provider holds greater responsibility in this process. In this particular model the process focuses on the healthcare provider and the essential skills needed to engage the patient in shard decisions. The competencies outlined in this model include:The healthcare provider must demonstrate knowledge, competencies, and skills as a communicator. The skills for communication competency require the healthcare provider to be able to elicit the patient's thoughts and input regarding treatment management throughout the consultation. The healthcare provider must also demonstrate competencies in assessment skills beyond physical assessment that includes the ability to assess the patient's perceptions and readiness to participate. In addition, the healthcare provider must be able to assess the patient's readiness to learn the information that the patient needs to know in order to fully engage in the shared decision-making process, assess what the patient already knows, what the patient does not know, and whether or not the information that the patient knows is accurate. Once this assessment is completed the healthcare provider then must draw on his/her knowledge, competencies, and skills necessary to teach the patient what the patient needs to know to be informed. This facilitates the notion of the tailor-made information noted previously. The healthcare provider also requires competencies in how to check and evaluate the entire process to ensure that the patient does understand and accept with comfort not only the plan being negotiated but the entire process of sharing in decision-making. In addition to the above, there are further competencies such as competence in working with groups and teams, competencies in terms of cultural knowledge, competencies with regard to negotiation skills, as well as, competencies when faced with ethical challenges.Shared decision-making has been associated with autonomy, empowerment, and effectiveness and efficiency. Both patients and health care providers have noted improvement in relationships and improved interactions when shared decision-making is in evidence. Along with this improved relationship and interaction enhanced compliance is noted. Additional research points to patient satisfaction and enhanced quality of life. There is some evidence to suggest that shared decision-making does facilitate positive health outcomes.In today's healthcare environment there is greater emphasis on patient-centered care that exemplifies patient engagement, participation, partnership, and shared decision-making. Given the shift from the more autocratic delivery of care to the shared approach there is a need to more fully understand the what of shared decision-making as well as how shared decision-making takes place along with what internal and external influences may encourage, support, and facilitate the shared decision-making process. These influences are intervening variables that may be of significance for the successful development of practice-based strategies that may foster shared decision-making in practice. The purpose of this qualitative systematic review is to identify internal and external influences on shared decision-making in all health care settings.A preliminary search of the Joanna Briggs Library of Systematic Reviews, MEDLINE, CINAHL, and PROSPERO did not identify any previously conducted qualitative systematic reviews on the meaningfulness of internal and external influences on shared decision-making.

Treatment of erectile dysfunction in patients with cardiovascular disease : guide to drug selection.

PubMed

Jackson, Graham

2004-01-01

Erectile dysfunction (ED) is common in cardiac patients and shares the same risk factors--smoking, hypertension, hyperlipidaemia and diabetes mellitus. Sexual activity is not unduly stressful to the heart and, providing patients are properly assessed using established guidelines, sexual intercourse can be enjoyed without increased risk. The treatment of ED in patients with cardiovascular disease has been transformed by the introduction of the oral phosphodiesterase type 5 inhibitors, the first of which was sildenafil. Success in restoring erectile function is possible in up to 80% of patients (depending on the aetiology) with minimal adverse effects. A synergistic hypotensive effect with nitrates, and almost certainly nicorandil, is the only major contraindication. ED in asymptomatic patients may be a marker of silent vascular disease or increased vascular risk factors and should alert the physician to the need for cardiac risk screening. ED is common in patients with cardiovascular disease and should be routinely enquired about. ED is a distressing condition for the man and his partner, and severely impairs quality of life. Patients with cardiovascular disease and patients with diabetes represent the largest group of patients with ED, the majority of whom benefit from the drug therapies currently available. Addressing ED in patients with cardiovascular disease can lead to a substantial improvement in quality of life and success is not difficult to achieve.

Developing a Common Framework for Evaluating the Implementation of Genomic Medicine Interventions in Clinical Care: The IGNITE Network’s Common Measures Working Group

PubMed Central

Orlando, Lori A.; Sperber, Nina R.; Voils, Corrine; Nichols, Marshall; Myers, Rachel A.; Wu, R. Ryanne; Rakhra-Burris, Tejinder; Levy, Kenneth D.; Levy, Mia; Pollin, Toni I.; Guan, Yue; Horowitz, Carol R.; Ramos, Michelle; Kimmel, Stephen E.; McDonough, Caitrin W.; Madden, Ebony B.; Damschroder, Laura J.

2017-01-01

Purpose Implementation research provides a structure for evaluating the clinical integration of genomic medicine interventions. This paper describes the Implementing GeNomics In PracTicE (IGNITE) Network’s efforts to promote: 1) a broader understanding of genomic medicine implementation research; and 2) the sharing of knowledge generated in the network. Methods To facilitate this goal the IGNITE Network Common Measures Working Group (CMG) members adopted the Consolidated Framework for Implementation Research (CFIR) to guide their approach to: identifying constructs and measures relevant to evaluating genomic medicine as a whole, standardizing data collection across projects, and combining data in a centralized resource for cross network analyses. Results CMG identified ten high-priority CFIR constructs as important for genomic medicine. Of those, eight didn’t have standardized measurement instruments. Therefore, we developed four survey tools to address this gap. In addition, we identified seven high-priority constructs related to patients, families, and communities that did not map to CFIR constructs. Both sets of constructs were combined to create a draft genomic medicine implementation model. Conclusion We developed processes to identify constructs deemed valuable for genomic medicine implementation and codified them in a model. These resources are freely available to facilitate knowledge generation and sharing across the field. PMID:28914267

Shared Genetic Factors Involved in Celiac Disease, Type 2 Diabetes and Anorexia Nervosa Suggest Common Molecular Pathways for Chronic Diseases.

PubMed

Mostowy, Joanna; Montén, Caroline; Gudjonsdottir, Audur H; Arnell, Henrik; Browaldh, Lars; Nilsson, Staffan; Agardh, Daniel; Torinsson Naluai, Åsa

2016-01-01

Genome-wide association studies (GWAS) have identified several genetic regions involved in immune-regulatory mechanisms to be associated with celiac disease. Previous GWAS also revealed an over-representation of genes involved in type 2 diabetes and anorexia nervosa associated with celiac disease, suggesting involvement of common metabolic pathways for development of these chronic diseases. The aim of this study was to extend these previous analyses to study the gene expression in the gut from children with active celiac disease. Thirty six target genes involved in type 2 diabetes and four genes associated with anorexia nervosa were investigated for gene expression in small intestinal biopsies from 144 children with celiac disease at median (range) age of 7.4 years (1.6-17.8) and from 154 disease controls at a median (range) age 11.4.years (1.4-18.3). A total of eleven of genes were differently expressed in celiac patients compared with disease controls of which CD36, CD38, FOXP1, SELL, PPARA, PPARG, AGT previously associated with type 2 diabetes and AKAP6, NTNG1 with anorexia nervosa remained significant after correction for multiple testing. Shared genetic factors involved in celiac disease, type 2 diabetes and anorexia nervosa suggest common underlying molecular pathways for these diseases.

Developing a common framework for evaluating the implementation of genomic medicine interventions in clinical care: the IGNITE Network's Common Measures Working Group.

PubMed

Orlando, Lori A; Sperber, Nina R; Voils, Corrine; Nichols, Marshall; Myers, Rachel A; Wu, R Ryanne; Rakhra-Burris, Tejinder; Levy, Kenneth D; Levy, Mia; Pollin, Toni I; Guan, Yue; Horowitz, Carol R; Ramos, Michelle; Kimmel, Stephen E; McDonough, Caitrin W; Madden, Ebony B; Damschroder, Laura J

2018-06-01

PurposeImplementation research provides a structure for evaluating the clinical integration of genomic medicine interventions. This paper describes the Implementing Genomics in Practice (IGNITE) Network's efforts to promote (i) a broader understanding of genomic medicine implementation research and (ii) the sharing of knowledge generated in the network.MethodsTo facilitate this goal, the IGNITE Network Common Measures Working Group (CMG) members adopted the Consolidated Framework for Implementation Research (CFIR) to guide its approach to identifying constructs and measures relevant to evaluating genomic medicine as a whole, standardizing data collection across projects, and combining data in a centralized resource for cross-network analyses.ResultsCMG identified 10 high-priority CFIR constructs as important for genomic medicine. Of those, eight did not have standardized measurement instruments. Therefore, we developed four survey tools to address this gap. In addition, we identified seven high-priority constructs related to patients, families, and communities that did not map to CFIR constructs. Both sets of constructs were combined to create a draft genomic medicine implementation model.ConclusionWe developed processes to identify constructs deemed valuable for genomic medicine implementation and codified them in a model. These resources are freely available to facilitate knowledge generation and sharing across the field.

General practitioners' perceptions of irritable bowel syndrome: a Q-methodological study.

PubMed

Bradley, Stephen; Alderson, Sarah; Ford, Alexander C; Foy, Robbie

2018-01-16

Irritable bowel syndrome (IBS) is a common disorder that imposes a significant burden upon societies, health care and quality of life, worldwide. While a diverse range of patient viewpoints on IBS have been explored, the opinions of the GPs they ideally need to develop therapeutic partnerships with are less well defined. To explore how GPs perceive IBS, using Q-methodology, which allows quantitative interpretation of qualitative data. A Q-methodological study of GPs in Leeds, UK. Thirty-three GPs completed an online Q-sort in which they ranked their level of agreement with 66 statements. Factor analysis of the Q-sorts was performed to determine the accounts that predominated in understandings of IBS. Ten of the GPs were interviewed in person and responses to the statements recorded to help explain the accounts. Analysis yielded one predominant account shared by all GPs-that IBS was a largely psychological disorder. This account overshadowed a debate represented by a minority, polarized between those who viewed IBS as almost exclusively psychological, versus those who believed IBS had an organic basis, with a psychological component. The overwhelming similarity in responses indicates that all GPs shared a common perspective on IBS. Interviews suggested degrees of uncertainty and discomfort around the aetiology of IBS. There was overwhelming agreement in the way GPs perceived IBS. This contrasts with the range of patient accounts of IBS and may explain why both GPs and their patients face difficult negotiations in achieving therapeutic relationships. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Launching a Laboratory Testing Process Quality Improvement Toolkit: From the Shared Networks of Colorado Ambulatory Practices and Partners (SNOCAP).

PubMed

Fernald, Douglas; Hamer, Mika; James, Kathy; Tutt, Brandon; West, David

2015-01-01

Family medicine and internal medicine physicians order diagnostic laboratory tests for nearly one-third of patient encounters in an average week, yet among medical errors in primary care, an estimated 15% to 54% are attributed to laboratory testing processes. From a practice improvement perspective, we (1) describe the need for laboratory testing process quality improvements from the perspective of primary care practices, and (2) describe the approaches and resources needed to implement laboratory testing process quality improvements in practice. We applied practice observations, process mapping, and interviews with primary care practices in the Shared Networks of Colorado Ambulatory Practices and Partners (SNOCAP)-affiliated practice-based research networks that field-tested in 2013 a laboratory testing process improvement toolkit. From the data collected in each of the 22 participating practices, common testing quality issues included, but were not limited to, 3 main testing process steps: laboratory test preparation, test tracking, and patient notification. Three overarching qualitative themes emerged: practices readily acknowledge multiple laboratory testing process problems; practices know that they need help addressing the issues; and practices face challenges with finding patient-centered solutions compatible with practice priorities and available resources. While practices were able to get started with guidance and a toolkit to improve laboratory testing processes, most did not seem able to achieve their quality improvement aims unassisted. Providing specific guidance tools with practice facilitation or other rapid-cycle quality improvement support may be an effective approach to improve common laboratory testing issues in primary care. © Copyright 2015 by the American Board of Family Medicine.

[Impact of shared-decision making on patient satisfaction].

PubMed

Suh, Won S; Lee, Chae Kyung

2010-01-01

The purpose of this research is to analyze the impact of shared-decision making on patient satisfaction. The study is significant since it focuses on developing appropriate methodologies and analyzing data to identify patient preferences, with the goals of optimizing treatment selection, and substantiating the relationship between such preferences and their impact on outcomes. A thorough literature review that developed the framework illustrating key dimensions of shared decision making was followed by a quantitative assessment and regression analysis of patient-perceived satisfaction, and the degree of shared-decision making. A positive association was evident between shared-decision making and patient satisfaction. The impact of shared decision making on patient satisfaction was greater than other variable including gender, education, and number of visits. Patients who participate in care-related decisions and who are given an explanation of their health problems are more likely to be satisfied with their care. It would benefit health care organizations to train their medical professionals in this communication method, and to include it in their practice guidelines.

Determinants of quality of shared sanitation facilities in informal settlements: case study of Kisumu, Kenya.

PubMed

Simiyu, Sheillah; Swilling, Mark; Cairncross, Sandy; Rheingans, Richard

2017-01-11

Shared facilities are not recognised as improved sanitation due to challenges of maintenance as they easily can be avenues for the spread of diseases. Thus there is need to evaluate the quality of shared facilities, especially in informal settlements, where they are commonly used. A shared facility can be equated to a common good whose management depends on the users. If users do not work collectively towards keeping the facility clean, it is likely that the quality may depreciate due to lack of maintenance. This study examined the quality of shared sanitation facilities and used the common pool resource (CPR) management principles to examine the determinants of shared sanitation quality in the informal settlements of Kisumu, Kenya. Using a multiple case study design, the study employed both quantitative and qualitative methods. In both phases, users of shared sanitation facilities were interviewed, while shared sanitation facilities were inspected. Shared sanitation quality was a score which was the dependent variable in a regression analysis. Interviews during the qualitative stage were aimed at understanding management practices of shared sanitation users. Qualitative data was analysed thematically by following the CPR principles. Shared facilities, most of which were dirty, were shared by an average of eight households, and their quality decreased with an increase in the number of households sharing. The effect of numbers on quality is explained by behaviour reflected in the CPR principles, as it was easier to define boundaries of shared facilities when there were fewer users who cooperated towards improving their shared sanitation facility. Other factors, such as defined management systems, cooperation, collective decision making, and social norms, also played a role in influencing the behaviour of users towards keeping shared facilities clean and functional. Apart from hardware factors, quality of shared sanitation is largely due to group behaviour of users. The CPR principles form a crucial lens through which the dynamics of shared sanitation facilities in informal settlements can be understood. Development and policy efforts should incorporate group behaviour as they determine the quality of shared sanitation facilities.

[Shared decision-making in medical practice--patient-centred communication skills].

PubMed

van Staveren, Remke

2011-01-01

Most patients (70%) want to participate actively in important healthcare decisions, the rest (30%) prefer the doctor to make the decision for them. Shared decision-making provides more patient satisfaction, a better quality of life and contributes to a better doctor-patient relationship. Patients making their own decision generally make a well considered and medically sensible choice. In shared decision-making the doctor asks many open questions, gives and requests much information, asks if the patient wishes to participate in the decision-making and explicitly takes into account patient circumstances and preferences. Shared decision-making should remain an individual choice and should not become a new dogma.

MDS/AML del(11)(q14) Share Common Morphological Features Despite Different Chromosomal Breakpoints.

PubMed

Dambruoso, Irene; Invernizzi, Rosangela; Boni, Marina; Zappatore, Rita; Giardini, Ilaria; Cavigliano, Maria Paola; Rocca, Barbara; Calvello, Celeste; Bastia, Raffaella; Caresana, Marilena; Pasi, Francesca; Nano, Rosanna; Bernasconi, Paolo

2017-02-01

In myelodysplatic syndromes and acute myeloid leukemia (MDS/AML) deletion of the 11q14 region is a rare chromosomal defect (incidence: 0.6-1.0%), included within the intermediate risk criteria by the International Prognostic Scoring System. No fluorescence in situ hybridization (FISH) study has yet been performed to identify a common breakpoint region (CBR). In our study through FISH with bacterial artificial chromosomes and commercial probes, we analyzed seven patients with MDS/AML harboring 11q14 deletion on conventional cytogenetic analysis. FISH revealed deletions in five patients and amplifications in two. Three patients with deletion carried a CBR, two had a deletion involving a more centromeric breakpoint. These five patients exhibited multilineage dysplasia, blast cells with large round nuclei, loose chromatin, small and abundant nucleoli, and vacuolated cytoplasm with very thin Auer bodies. In conclusion, the morphological features which occur independently of the extent of the deletion are of multilineage dysplasia in MDS and leukemic blasts strongly reactive to peroxidase in AML; despite the variable size of the deleted area, some patients harbor a CBR. Copyright© 2017, International Institute of Anticancer Research (Dr. George J. Delinasios), All rights reserved.

CAM use in pediatric neurology: an exploration of concurrent use with conventional medicine.

PubMed

Galicia-Connolly, Elaine; Adams, Denise; Bateman, Justin; Dagenais, Simon; Clifford, Tammy; Baydala, Lola; King, W James; Vohra, Sunita

2014-01-01

Previous studies have found that up to 60% of children with neurologic conditions have tried complementary and alternative medicine (CAM). To assess the use of CAM among patients presenting to neurology clinics at two academic centers in Canada. A survey instrument was developed to inquire about use of CAM products and therapies, including reasons for use, perceived helpfulness, and concurrent use with conventional medicine, and administered to patients or their parents/guardians at the Stollery Children's Hospital in Edmonton and the Children's Hospital of Eastern Ontario (CHEO) in Ottawa. Overall CAM use at the Stollery was 78%, compared to 48% at CHEO. The most common CAM products used were multi-vitamins (84%), vitamin C (37%), homeopathic remedies (24%), and fish oil/omega 3 s (22%). The most common CAM practices used were massage (47%), chiropractic (37%), faith healing (18%), aromatherapy (16%), homeopathy (16%), and relaxation (16%). Many patients used CAM products at the same time as conventional medicine but just over half (57%) discussed this concurrent use with their physician. CAM use is common in pediatric neurology patients and most respondents felt that it was helpful, with few or no harms associated. However, this use is often undisclosed, increasing possibility of interactions with conventional drugs. We urge clinicians to inquire about CAM use during routine history taking at every patient visit. Parents would clearly like more information about CAM from their specialty clinics; such information would be easier to share if more primary data were available about the safety and effectiveness of commonly used therapies.

CAM Use in Pediatric Neurology: An Exploration of Concurrent Use with Conventional Medicine

PubMed Central

Galicia-Connolly, Elaine; Adams, Denise; Bateman, Justin; Dagenais, Simon; Clifford, Tammy; Baydala, Lola; King, W. James; Vohra, Sunita

2014-01-01

Background Previous studies have found that up to 60% of children with neurologic conditions have tried complementary and alternative medicine (CAM). Objective To assess the use of CAM among patients presenting to neurology clinics at two academic centers in Canada. Methods A survey instrument was developed to inquire about use of CAM products and therapies, including reasons for use, perceived helpfulness, and concurrent use with conventional medicine, and administered to patients or their parents/guardians at the Stollery Children's Hospital in Edmonton and the Children's Hospital of Eastern Ontario (CHEO) in Ottawa. Results Overall CAM use at the Stollery was 78%, compared to 48% at CHEO. The most common CAM products used were multi-vitamins (84%), vitamin C (37%), homeopathic remedies (24%), and fish oil/omega 3 s (22%). The most common CAM practices used were massage (47%), chiropractic (37%), faith healing (18%), aromatherapy (16%), homeopathy (16%), and relaxation (16%). Many patients used CAM products at the same time as conventional medicine but just over half (57%) discussed this concurrent use with their physician. Conclusion CAM use is common in pediatric neurology patients and most respondents felt that it was helpful, with few or no harms associated. However, this use is often undisclosed, increasing possibility of interactions with conventional drugs. We urge clinicians to inquire about CAM use during routine history taking at every patient visit. Parents would clearly like more information about CAM from their specialty clinics; such information would be easier to share if more primary data were available about the safety and effectiveness of commonly used therapies. PMID:24736474

Understanding Pain and Pain Management in Elderly Nursing Home Patients Applying an Interprofessional Learning Activity in Health Care Students: A Norwegian Pilot Study.

PubMed

Damsgård, Elin; Solgård, Hege; Johannessen, Karin; Wennevold, Katrine; Kvarstein, Gunnvald; Pettersen, Gunn; Garcia, Beate

2018-05-17

Pain is common among elderly patients in nursing homes. However, pain assessment and treatment are inadequate. Interprofessional treatment is recommended, and consequently interprofessional education in pain management is necessary. This pilot project aimed to describe how two interprofessional groups of students approached pain management in two nursing home patients. We formed two teams comprising one student from the nursing, physical therapy, pharmacy, and medical educations. Each team spent one day examining a patient with chronic pain at a nursing home and they developed pain management plans. We collected data through video recordings during teamwork before and after examining the patients and field notes during the patient examination. We analysed the video-recordings applying the seven-step model including 1) viewing the video data, 2) describing the video data, 3) identifying critical events, 4) transcribing, 5) coding, 6) constructing storyline and 7) composing a narrative. Field notes supplied the transcripts. Both teams succeeded in making a pain management plan for their patient. The common examination of the patient was crucial for the students' approaches to pain management and changed their pre-assumptions about the patients' pain. By sharing knowledge and reflecting together, the students reached a common consensus on suggestions for management of the patients' problems. Interprofessional collaboration fostered enthusiasm and a more holistic pain management approach. However,students' lack of knowledge limited their understanding of pain. Knowledge of pain management in nursing home patients and the practice of interprofessional cooperation should be included in pain curricula for health care professionals. Copyright © 2018 American Society for Pain Management Nursing. Published by Elsevier Inc. All rights reserved.

Shared decision-making - Rhetoric and reality: Women's experiences and perceptions of adjuvant treatment decision-making for breast cancer.

PubMed

Mahmoodi, Neda; Sargeant, Sally

2017-01-01

This interview-based study uses phenomenology as a theoretical framework and thematic analysis to challenge existing explanatory frameworks of shared decision-making, in an exploration of women's experiences and perceptions of shared decision-making for adjuvant treatment in breast cancer. Three themes emerged are as follows: (1) women's desire to participate in shared decision-making, (2) the degree to which shared decision-making is perceived to be shared and (3) to what extent are women empowered within shared decision-making. Studying breast cancer patients' subjective experiences of adjuvant treatment decision-making provides a broader perspective on patient participatory role preferences and doctor-patient power dynamics within shared decision-making for breast cancer.

Goal setting with type 2 diabetes: a hermeneutic analysis of the experiences of diabetes educators.

PubMed

Fleming, Susan E; Boyd, Angela; Ballejos, Miriam; Kynast-Gales, Susan A; Malemute, Charlene L; Armstrong Shultz, Jill; Vandermause, Roxanne K

2013-01-01

The purpose of this study was to explicate and interpret common experiences of diabetes educators (DEs) with patient goal setting for patients with type 2 diabetes in diabetes education. Transcripts (n = 10) from semi-structured interviews were analyzed using a hermeneutic phenomenological approach to more deeply explore the accounts of DEs' goal setting with patients with type 2 diabetes. The overarching pattern that emerged was "Striking a Balance," which subsumed 4 subthemes: Applying Theoretical-Practical Principles When Setting Goals, Identifying Idealistic-Realistic Expectations, Creating Patient-Educator-Centered Plans, and Readying-Living With Goal Setting. The pattern, "Striking a Balance," revealed a common meaning of DEs as experiences requiring balance and nuance in goal setting with patients. The results of this study combined with the tenets of the self-determination theory can provide the DEs with real-life exemplars and a theoretical framework to encourage their patients to self-manage, increase intrinsic motivation, and improve adherence related to their lifestyle changes and glycemic control. DEs, as facilitators of change, can implement these changes with flexible and reciprocal activities with their patients. The DEs owned these activities and they are: "building the bond," "sharing the session," "readying for change," "sending them home," and "bringing them back."

The inadvertent breach of confidentiality.

PubMed

Erlen, J A

1998-01-01

Patients believe that personal information that they share with their health care providers will be kept strictly confidential. Safeguarding a confidence has been and continues to be an expected professional behavior. Yet, a common ethical problem that nurses face in their everyday practice is the inadvertent disclosure of private information about particular patients to individuals who have no need for this information. This article discusses the inadvertent breach of confidentiality and its related ethical concepts: privacy, respect for persons, trust and fidelity, and the potential for harm or injury. Recommendations are provided to enable nurses to avoid and manage situations that involve an inadvertent breach of confidentiality.

CE: Lyme Disease: Diagnosis, Treatment, and Prevention.

PubMed

Patton, Susan Kane; Phillips, Bailey

2018-04-01

: Lyme disease is recognized as the most common vector-borne disease in the United States. Surveillance data indicate both increasing numbers of Lyme disease cases and geographic expansion of areas where the causative spirochete, Borrelia burgdorferi, can be found. With prompt diagnosis and appropriate treatment in the acute stage, most patients will recover fully. Without treatment, however, the infecting pathogen remains within the body, often producing long-term complications, including musculoskeletal, neurologic, and cardiovascular effects. The authors describe early and late manifestations of Lyme disease, the appropriate use of diagnostic tests, the recommended treatment, and strategies for preventing tick-borne diseases nurses can share with patients.

Cardiac transplantation in situs inversus: two cases reports.

PubMed

Chang, Y L; Wei, J; Chang, C-Y; Chuang, Y-C; Sue, S-H

2008-10-01

The challenge of heart transplantation in patients with situs inversus is reconstruction of the systemic venous return. Herein we have presented 2 cases of complex congenital heart disease with atriovisceral situs inversus. Both of the patients shared many common cardiac anomalies, such as a single ventricle, a single AV valve with severe regurgitation, and severe pulmonary stenosis. We completed the venous connection in 2 different ways. In the first case, the donor inferior vena cava (IVC) was anastomosed to the recipient left-sided IVC directly, making the heart slightly counterclockwise rotated. In the second case, the IVC venous reconnection was accomplished by a composite conduit made of recipient right atrium.

Neuroanatomical phenotypes in mental illness: identifying convergent and divergent cortical phenotypes across autism, ADHD and schizophrenia.

PubMed

Park, Min Tae M; Raznahan, Armin; Shaw, Philip; Gogtay, Nitin; Lerch, Jason P; Chakravarty, M Mallar

2018-05-01

There is evidence suggesting neuropsychiatric disorders share genomic, cognitive and clinical features. Here, we ask if autism-spectrum disorders (ASD), attention-deficit/hyperactivity disorder (ADHD) and schizophrenia share neuroanatomical variations. First, we used measures of cortical anatomy to estimate spatial overlap of neuroanatomical variation using univariate methods. Next, we developed a novel methodology to determine whether cortical deficits specifically target or are "enriched" within functional resting-state networks. We found cortical anomalies were preferentially enriched across functional networks rather than clustering spatially. Specifically, cortical thickness showed significant enrichment between patients with ASD and those with ADHD in the default mode network, between patients with ASD and those with schizophrenia in the frontoparietal and limbic networks, and between patients with ADHD and those with schizophrenia in the ventral attention network. Networks enriched in cortical thickness anomalies were also strongly represented in functional MRI results (Neurosynth; r = 0.64, p = 0.032). We did not account for variable symptom dimensions and severity in patient populations, and our cross-sectional design prevented longitudinal analyses of developmental trajectories. These findings suggest that common deficits across neuropsychiatric disorders cannot simply be characterized as arising out of local changes in cortical grey matter, but rather as entities of both local and systemic alterations targeting brain networks.

Neuropathic ocular pain due to dry eye is associated with multiple comorbid chronic pain syndromes

PubMed Central

Galor, Anat; Covington, Derek; Levitt, Alexandra E.; McManus, Katherine T.; Seiden, Benjamin; Felix, Elizabeth R.; Kalangara, Jerry; Feuer, William; Patin, Dennis J.; Martin, Eden R.; Sarantopoulos, Konstantinos D.; Levitt, Roy C.

2015-01-01

Recent data demonstrate that dry eye (DE) susceptibility and other chronic pain syndromes (CPS) such as chronic widespread pain, irritable bowel syndrome and pelvic pain, may share common heritable factors. Previously, we showed that DE patients describing more severe symptoms tended to report features of neuropathic ocular pain (NOP). We hypothesize that patients with a greater number of CPS would have a different DE phenotype compared to those with fewer CPS. We recruited a cohort of 154 DE patients from the Miami Veterans Affairs Hospital and defined high and low CPS groups by cluster analysis. In addition to worse non-ocular pain complaints and higher PTSD and depression scores (P<0.01), we found that the high CPS group reported more severe neuropathic-type DE symptoms compared to the low CPS group, including worse ocular pain assessed via 3 different pain scales (P<0.05), with similar objective corneal DE signs. This is the first study to demonstrate DE patients who manifest a greater number of comorbid CPS report more severe DE symptoms and features of NOP. These findings provide further evidence that NOP may represent a central pain disorder, and that shared mechanistic factors may underlie vulnerability to some forms of DE and other comorbid CPS. PMID:26606863

Neuroanatomical phenotypes in mental illness: identifying convergent and divergent cortical phenotypes across autism, ADHD and schizophrenia.

PubMed

Park, Min Tae M; Raznahan, Armin; Shaw, Philip; Gogtay, Nitin; Lerch, Jason P; Chakravarty, M Mallar

2018-02-05

There is evidence suggesting neuropsychiatric disorders share genomic, cognitive and clinical features. Here, we ask if autism-spectrum disorders (ASD), attention-deficit/hyperactivity disorder (ADHD) and schizophrenia share neuroanatomical variations. First, we used measures of cortical anatomy to estimate spatial overlap of neuroanatomical variation using univariate methods. Next, we developed a novel methodology to determine whether cortical deficits specifically target or are "enriched" within functional resting-state networks. We found cortical anomalies were preferentially enriched across functional networks rather than clustering spatially. Specifically, cortical thickness showed significant enrichment between patients with ASD and those with ADHD in the default mode network, between patients with ASD and those with schizophrenia in the frontoparietal and limbic networks, and between patients with ADHD and those with schizophrenia in the ventral attention network. Networks enriched in cortical thickness anomalies were also strongly represented in functional MRI results (Neurosynth; r = 0.64, p = 0.032). We did not account for variable symptom dimensions and severity in patient populations, and our cross-sectional design prevented longitudinal analyses of developmental trajectories. These findings suggest that common deficits across neuropsychiatric disorders cannot simply be characterized as arising out of local changes in cortical grey matter, but rather as entities of both local and systemic alterations targeting brain networks.

Making the Middle Count: Three Tools to Improve Throughput for a Better Patient Experience.

PubMed

Esbenshade, Angie

2015-01-01

This article discusses three ways in which dramatic improvements in middle flow, or examination-to-disposition time, can be driven by emergency department (ED) nursing leadership. By operationalizing a "results pending" area, low-acuity patients who are unlikely to be admitted can await diagnostic results or be actively monitored by a dedicated nurse, ED rooms and beds may be reserved for higher acuity patients. Monthly operational stakeholder meetings can provide a consistent opportunity to track, monitor, and improve flow while also celebrating successes and identifying needed performance improvements based on objective metrics for shared goals. Internal customer rounding is a process that serves as effective follow-up from the stakeholder meeting to ensure aligned behaviors to meet identified goals. Frequency of rounding is identified during the stakeholder meeting. By using these three tools, ED stakeholders can effectively focus on solutions instead of barriers to improving middle flow.This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License, where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially.

Incentivizing shared decision making in the USA--where are we now?

PubMed

Durand, Marie-Anne; Barr, Paul J; Walsh, Thom; Elwyn, Glyn

2015-06-01

The Affordable Care Act raised significant interest in the process of shared decision making, the role of patient decision aids, and incentivizing their utilization. However, it has not been clear how best to put incentives into practice, and how the implementation of shared decision making and the use of patient decision aids would be measured. Our goal was to review developments and proposals put forward. We performed a qualitative document analysis following a pragmatic search of Medline, Google, Google Scholar, Business Source Complete (Ebscohost), and LexisNexis from 2009-2013 using the following key words: "Patient Protection and Affordable Care Act", "Decision Making", "Affordable Care Act", "Shared Decision Making", "measurement", "incentives", and "payment." We observed a lack of clarity about how to measure shared decision making, about how best to reward the use of patient decisions aids, and therefore how best to incentivize the process. Many documents clearly imply that providing and disseminating patient decision aids might be equivalent to shared decision making. However, there is little evidence that these tools, when used by patients in advance of clinical encounters, lead to significant change in patient-provider communication. The assessment of shared decision making for performance management remains challenging. Efforts to incentivize shared decision making are at risk of being limited to the promotion of patient decision aids, passing over the opportunity to influence the communication processes between patients and providers. Copyright © 2014 Elsevier Inc. All rights reserved.

Formal Professional Relationships Between General Practitioners and Specialists in Shared Care: Possible Associations with Patient Health and Pharmacy Costs.

PubMed

Lublóy, Ágnes; Keresztúri, Judit Lilla; Benedek, Gábor

2016-04-01

Shared care in chronic disease management aims at improving service delivery and patient outcomes, and reducing healthcare costs. The introduction of shared-care models is coupled with mixed evidence in relation to both patient health status and cost of care. Professional interactions among health providers are critical to a successful and efficient shared-care model. This article investigates whether the strength of formal professional relationships between general practitioners (GPs) and specialists (SPs) in shared care affects either the health status of patients or their pharmacy costs. In strong GP-SP relationships, the patient health status is expected to be high, due to efficient care coordination, and the pharmacy costs low, due to effective use of resources. This article measures the strength of formal professional relationships between GPs and SPs through the number of shared patients and proxies the patient health status by the number of comorbidities diagnosed and treated. To test the hypotheses and compare the characteristics of the strongest GP-SP connections with those of the weakest, this article concentrates on diabetes-a chronic condition where patient care coordination is likely important. Diabetes generates the largest shared patient cohort in Hungary, with the highest frequency of specialist medication prescriptions. This article finds that stronger ties result in lower pharmacy costs, but not in higher patient health status. Overall drug expenditure may be reduced by lowering patient care fragmentation through channelling a GP's patients to a small number of SPs.

Partial epilepsy and 47,XXX karyotype: report of four cases.

PubMed

Roubertie, Agathe; Humbertclaude, Véronique; Leydet, Julie; Lefort, Geneviève; Echenne, Bernard

2006-07-01

Epilepsy is a common finding in chromosomal imbalances, but only a few chromosome abnormalities have a characteristic electro-clinical pattern. Trisomy X is one of the most common sex chromosome abnormalities in females, and is associated with considerable phenotypic variability. This report describes four 47,XXX females with mental deficiency and epilepsy. Although a specific electro-clinical pattern could not be defined, the epileptic phenotypes of these patients share many features; we suggest that the association 47,XXX/epilepsy/mental retardation may not be coincidental. This report also enlarges the clinical spectrum of the 47,XXX phenotype. Moreover, these observations highlight the critical role of chromosome X in epilepsy and mental retardation.

A Large-Scale Initiative Inviting Patients to Share Personal Fitness Tracker Data with Their Providers: Initial Results

PubMed Central

Pevnick, Joshua M.; Fuller, Garth; Duncan, Ray; Spiegel, Brennan M. R.

2016-01-01

Background Personal fitness trackers (PFT) have substantial potential to improve healthcare. Objective To quantify and characterize early adopters who shared their PFT data with providers. Methods We used bivariate statistics and logistic regression to compare patients who shared any PFT data vs. patients who did not. Results A patient portal was used to invite 79,953 registered portal users to share their data. Of 66,105 users included in our analysis, 499 (0.8%) uploaded data during an initial 37-day study period. Bivariate and regression analysis showed that early adopters were more likely than non-adopters to be younger, male, white, health system employees, and to have higher BMIs. Neither comorbidities nor utilization predicted adoption. Conclusion Our results demonstrate that patients had little intrinsic desire to share PFT data with their providers, and suggest that patients most at risk for poor health outcomes are least likely to share PFT data. Marketing, incentives, and/or cultural change may be needed to induce such data-sharing. PMID:27846287

Do Upper Extremity Trauma Patients Have Different Preferences for Shared Decision-making Than Patients With Nontraumatic Conditions?

PubMed

Hageman, Michiel G J S; Reddy, Rajesh; Makarawung, Dennis J S; Briet, Jan Paul; van Dijk, C Niek; Ring, David

2015-11-01

Shared decision-making is a combination of expertise, available scientific evidence, and the preferences of the patient and surgeon. Some surgeons contend that patients are less capable of participating in decisions about traumatic conditions than nontraumatic conditions. (1) Do patients with nontraumatic conditions have different preferences for shared decision-making when compared with those who sustained acute trauma? (2) Do disability, symptoms of depression, and self-efficacy correlate with preference for shared decision-making? In this prospective, comparative trial, we evaluated a total of 133 patients presenting to the outpatient practices of two university-based hand surgeons with traumatic or nontraumatic hand and upper extremity illnesses or conditions. Each patient completed questionnaires measuring their preferred role in healthcare decision-making (Control Preferences Scale [CPS]), symptoms of depression (Patients' Health Questionnaire), and pain self-efficacy (confidence that one can achieve one's goals despite pain; measured using the Pain Self-efficacy Questionnaire). Patients also completed a short version of the Disabilities of the Arm, Shoulder, and Hand questionnaire and an ordinal rating of pain intensity. There was no difference in decision-making preferences between patients with traumatic (CPS: 3 ± 2) and nontraumatic conditions (CPS: 3 ± 1 mean difference = 0.2 [95% confidence interval, -0.4 to 0.7], p = 0.78) with most patients (95 versus 38) preferring shared decision-making. More educated patients preferred a more active role in decision-making (beta = -0.1, r = 0.08, p = 0.001); however, differences in levels of disability, pain and function, depression, and pain-related self-efficacy were not associated with differences in patients' preferences in terms of shared decision-making. Patients who sustained trauma have on average the same preference for shared decision-making compared with patients who sustained no trauma. Now that we know the findings of this study, clinicians might be motivated to share their expertise about the treatment options, potential outcomes, benefits, and harms with the patient and to discuss their preference as well in a semiacute setting, resulting in a shared decision.

Benefit sharing: an exploration on the contextual discourse of a changing concept

PubMed Central

2013-01-01

Background The concept of benefit sharing has been a topical issue on the international stage for more than two decades, gaining prominence in international law, research ethics and political philosophy. In spite of this prominence, the concept of benefit sharing is not devoid of controversies related to its definition and justification. This article examines the discourses and justifications of benefit sharing concept. Discussion We examine the discourse on benefit sharing within three main spheres; namely: common heritage of humankind, access and use of genetic resources according to the Convention on Biological Diversity (CBD), and international clinical research. Benefit sharing has change from a concept that is enshrined in a legally binding regulation in the contexts of common heritage of humankind and CBD to a non-binding regulation in international clinical research. Nonetheless, there are more ethical justifications that accentuate benefit sharing in international clinical research than in the contexts of common heritage of humankind and the CBD. Summary There is a need to develop a legal framework in order to strengthen the advocacy and decisiveness of benefit sharing practice in international health research. Based on this legal framework, research sponsors would be required to provide a minimum set of possible benefits to participants and communities in research. Such legal framework on benefit sharing will encourage research collaboration with local communities; and dispel mistrust between research sponsors and host communities. However, more research is needed—drawing from other international legal frameworks, to understand how such a legal framework on benefit sharing can be successfully formulated in international health research. PMID:24028325

Development of a prehospital vital signs chart sharing system.

PubMed

Nakada, Taka-aki; Masunaga, Naohisa; Nakao, Shota; Narita, Maiko; Fuse, Takashi; Watanabe, Hiroaki; Mizushima, Yasuaki; Matsuoka, Tetsuya

2016-01-01

Physiological parameters are crucial for the caring of trauma patients. There is a significant loss of prehospital vital signs data of patients during handover between prehospital and in-hospital teams. Effective strategies for reducing the loss remain a challenging research area. We tested whether the newly developed electronic automated prehospital vital signs chart sharing system would increase the amount of prehospital vital signs data shared with a remote trauma center prior to hospital arrival. Fifty trauma patients, transferred to a level I trauma center in Japan, were studied. The primary outcome variable was the number of prehospital vital signs shared with the trauma center prior to hospital arrival. The prehospital vital signs chart sharing system significantly increased the number of prehospital vital signs, including blood pressure, heart rate, and oxygen saturation, shared with the in-hospital team at a remote trauma center prior to patient arrival at the hospital (P < .0001). There were significant differences in prehospital vital signs during ambulance transfer between patients who had severe bleeding and non-severe bleeding within 24 hours after injury onset. Vital signs data collected during ambulance transfer via patient monitors could be automatically converted to easily visible patient charts and effectively shared with the remote trauma center prior to hospital arrival. The prehospital vital signs chart sharing system increased the number of precise vital signs shared prior to patient arrival at the hospital, which can potentially contribute to better trauma care without increasing labor and reduce information loss during clinical handover. Copyright © 2015 Elsevier Inc. All rights reserved.

Shared Mind: Communication, Decision Making, and Autonomy in Serious Illness

PubMed Central

Epstein, Ronald M.; Street, Richard L.

2011-01-01

In the context of serious illness, individuals usually rely on others to help them think and feel their way through difficult decisions. To help us to understand why, when, and how individuals involve trusted others in sharing information, deliberation, and decision making, we offer the concept of shared mind—ways in which new ideas and perspectives can emerge through the sharing of thoughts, feelings, perceptions, meanings, and intentions among 2 or more people. We consider how shared mind manifests in relationships and organizations in general, building on studies of collaborative cognition, attunement, and sensemaking. Then, we explore how shared mind might be promoted through communication, when appropriate, and the implications of shared mind for decision making and patient autonomy. Next, we consider a continuum of patient-centered approaches to patient-clinician interactions. At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end, a transactional approach focuses on knowledge about the patient, information-as-commodity, negotiation, consent, and individual autonomy. Finally, we propose that autonomy and decision making should consider not only the individual perspectives of patients, their families, and members of the health care team, but also the perspectives that emerge from the interactions among them. By drawing attention to shared mind, clinicians can observe in what ways they can promote it through bidirectional sharing of information and engaging in shared deliberation. PMID:21911765

Shared mind: communication, decision making, and autonomy in serious illness.

PubMed

Epstein, Ronald M; Street, Richard L

2011-01-01

In the context of serious illness, individuals usually rely on others to help them think and feel their way through difficult decisions. To help us to understand why, when, and how individuals involve trusted others in sharing information, deliberation, and decision making, we offer the concept of shared mind-ways in which new ideas and perspectives can emerge through the sharing of thoughts, feelings, perceptions, meanings, and intentions among 2 or more people. We consider how shared mind manifests in relationships and organizations in general, building on studies of collaborative cognition, attunement, and sensemaking. Then, we explore how shared mind might be promoted through communication, when appropriate, and the implications of shared mind for decision making and patient autonomy. Next, we consider a continuum of patient-centered approaches to patient-clinician interactions. At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end, a transactional approach focuses on knowledge about the patient, information-as-commodity, negotiation, consent, and individual autonomy. Finally, we propose that autonomy and decision making should consider not only the individual perspectives of patients, their families, and members of the health care team, but also the perspectives that emerge from the interactions among them. By drawing attention to shared mind, clinicians can observe in what ways they can promote it through bidirectional sharing of information and engaging in shared deliberation.

Histopathological effects of intranasal phototherapy and nasal corticosteroids in allergic rhinitis in a rabbit model.

PubMed

Yurttas, Veysel; Şereflican, Murat; Erkoçoğlu, Mustafa; Terzi, Elçin Hakan; Kükner, Aysel; Oral, Mesut

2015-08-01

Allergic rhinitis is one of the most common health problems and has a major effect on quality of life. Although new-generation antihistamines and nasal steroids are the main treatment options, complete resolution cannot be obtained in some patients. Besides common side effects such as nasal irritation and epistaxis, the use of these drugs is controversial in some patients, such as pregnant or breastfeeding women. These findings highlight the need for new treatment options. Although phototherapy has been successfully used in the treatment of atopic dermatitis, which is an IgE-mediated disease and shares several common pathogenic features with allergic rhinitis, there are limited studies about its role in the treatment of allergic rhinitis. In this study, we aimed to evaluate and compare the histopathological effects of intranasal phototherapy (Rhinolight) and nasal corticosteroid treatment on the nasal mucosa in allergic rhinitis in a rabbit model and we found that both treatment options significantly reduced inflammation in the nasal mucosa without increasing apoptosis of mucosal cells. Copyright © 2015 Elsevier B.V. All rights reserved.

How physician electronic health record screen sharing affects patient and doctor non-verbal communication in primary care.

PubMed

Asan, Onur; Young, Henry N; Chewning, Betty; Montague, Enid

2015-03-01

Use of electronic health records (EHRs) in primary-care exam rooms changes the dynamics of patient-physician interaction. This study examines and compares doctor-patient non-verbal communication (eye-gaze patterns) during primary care encounters for three different screen/information sharing groups: (1) active information sharing, (2) passive information sharing, and (3) technology withdrawal. Researchers video recorded 100 primary-care visits and coded the direction and duration of doctor and patient gaze. Descriptive statistics compared the length of gaze patterns as a percentage of visit length. Lag sequential analysis determined whether physician eye-gaze influenced patient eye gaze, and vice versa, and examined variations across groups. Significant differences were found in duration of gaze across groups. Lag sequential analysis found significant associations between several gaze patterns. Some, such as DGP-PGD ("doctor gaze patient" followed by "patient gaze doctor") were significant for all groups. Others, such DGT-PGU ("doctor gaze technology" followed by "patient gaze unknown") were unique to one group. Some technology use styles (active information sharing) seem to create more patient engagement, while others (passive information sharing) lead to patient disengagement. Doctors can engage patients in communication by using EHRs in the visits. EHR training and design should facilitate this. Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

Shared Decision-Making for Nursing Practice: An Integrative Review.

PubMed

Truglio-Londrigan, Marie; Slyer, Jason T

2018-01-01

Shared decision-making has received national and international interest by providers, educators, researchers, and policy makers. The literature on shared decision-making is extensive, dealing with the individual components of shared decision-making rather than a comprehensive process. This view of shared decision-making leaves healthcare providers to wonder how to integrate shared decision-making into practice. To understand shared decision-making as a comprehensive process from the perspective of the patient and provider in all healthcare settings. An integrative review was conducted applying a systematic approach involving a literature search, data evaluation, and data analysis. The search included articles from PubMed, CINAHL, the Cochrane Central Register of Controlled Trials, and PsycINFO from 1970 through 2016. Articles included quantitative experimental and non-experimental designs, qualitative, and theoretical articles about shared decision-making between all healthcare providers and patients in all healthcare settings. Fifty-two papers were included in this integrative review. Three categories emerged from the synthesis: (a) communication/ relationship building; (b) working towards a shared decision; and (c) action for shared decision-making. Each major theme contained sub-themes represented in the proposed visual representation for shared decision-making. A comprehensive understanding of shared decision-making between the nurse and the patient was identified. A visual representation offers a guide that depicts shared decision-making as a process taking place during a healthcare encounter with implications for the continuation of shared decisions over time offering patients an opportunity to return to the nurse for reconsiderations of past shared decisions.

Qualitative Data Sharing Practices in Social Sciences

ERIC Educational Resources Information Center

Jeng, Wei

2017-01-01

Social scientists have been sharing data for a long time. Sharing qualitative data, however, has not become a common practice, despite the context of e-Research, information growth, and funding agencies' mandates on research data archiving and sharing. Since most systematic and comprehensive studies are based on quantitative data practices, little…

Diversity and dynamics of patient cost-sharing for physicians' and hospital services in the 27 European Union countries.

PubMed

Tambor, Marzena; Pavlova, Milena; Woch, Piotr; Groot, Wim

2011-10-01

During the past decades, many governments have introduced patient cost-sharing in their public health-care system. This trend in health-care reforms affected the European Union (EU) member states as well. This article presents a review of patient cost-sharing for health-care services in the 27 EU countries, and discusses directions for their improvement. Data are collected based on a review of international data bases, national laws and regulations, as well as scientific and policy reports. The analysis presents a combination of qualitative and quantitative research techniques. Patient cost-sharing arrangements in the EU have been changing considerably over the past two decades (mostly being extended) and are quite diverse at present. There is a relation between patient cost-sharing arrangements and some characteristics of the health-care system in a country. In a few EU countries, a mix of formal and informal charges exists, which creates a double financial burden for health-care consumers. The adequacy of patient cost-sharing arrangements in EU countries needs to be reconsidered. Most importantly, it is essential to deal with informal patient payments (where applicable) and to assure adequate exemption mechanisms to diminish the adverse equity effects of patient cost-sharing. A close communication with the public is needed to clarify the objectives and content of a patient payment policy in a country.

Endemic pemphigus foliaceus in Venezuela: report of two children.

PubMed

González, Francisco; Sáenz, Ana Maria; Cirocco, Antonietta; Tacaronte, Inés Maria; Fajardo, Javier Enrique; Calebotta, Adriana

2006-01-01

Two native Yanomami children from the Venezuelan Amazonia with erythroderma were hospitalized on our service. Clinical, histologic, and immunofluorescence studies diagnosed endemic pemphigus foliaceous. Human leukocyte antigen class II showed DRB1*04 subtype *0411, which has not been previously associated with this disease. However, it shares a common epitope with all the human leukocyte antigen DRB1 alleles that have been involved in this disease among Brazilian populations. Although this condition is endemic in Brazil, our patients are the first two reported in Venezuela.

Periodontitis is associated with significant hepatic fibrosis in patients with non-alcoholic fatty liver disease.

PubMed

Alazawi, William; Bernabe, Eduardo; Tai, David; Janicki, Tomasz; Kemos, Polychronis; Samsuddin, Salma; Syn, Wing-Kin; Gillam, David; Turner, Wendy

2017-01-01

Non-alcoholic fatty liver disease (NAFLD) has a bidirectional association with metabolic syndrome. It affects up to 30% of the general population, 70% of individuals with diabetes and 90% with obesity. The main histological hallmark of progressive NAFLD is fibrosis. There is a bidirectional epidemiological link between periodontitis and metabolic syndrome. NAFLD, periodontitis and diabetes share common risk factors, are characterised by inflammation and associated with changes in commensal bacteria. Therefore we tested the hypothesis that periodontitis is associated with NAFLD and with significant fibrosis in two study groups. We analyzed data from a population-based survey and a patient-based study. NHANES III participants with abdominal ultrasound and sociodemographic, clinical, and oral examination data were extracted and appropriate weighting applied. In a separate patient-based study, consenting patients with biopsy-proved NAFLD (or with liver indices too mild to justify biopsy) underwent dental examination. Basic Periodontal Examination score was recorded. In NHANES, periodontitis was significantly associated with steatosis in 8172 adults even after adjusting for sociodemographic factors. However, associations were fully explained after accounting for features of metabolic syndrome. In the patient-based study, periodontitis was significantly more common in patients with biopsy-proven NASH and any fibrosis (F0-F4) than without NASH (p = 0.009). Periodontitis was more common in patients with NASH and significant fibrosis (F2-4) than mild or no fibrosis (F0-1, p = 0.04). Complementary evidence from an epidemiological survey and a clinical study show that NAFLD is associated with periodontitis and that the association is stronger with significant liver fibrosis.

Small-Cell Carcinomas of the Bladder and Lung Are Characterized by a Convergent but Distinct Pathogenesis.

PubMed

Chang, Matthew T; Penson, Alexander; Desai, Neil B; Socci, Nicholas D; Shen, Ronglai; Seshan, Venkatraman E; Kundra, Ritika; Abeshouse, Adam; Viale, Agnes; Cha, Eugene K; Hao, Xueli; Reuter, Victor E; Rudin, Charles M; Bochner, Bernard H; Rosenberg, Jonathan E; Bajorin, Dean F; Schultz, Nikolaus; Berger, Michael F; Iyer, Gopa; Solit, David B; Al-Ahmadie, Hikmat A; Taylor, Barry S

2018-04-15

Purpose: Small-cell carcinoma of the bladder (SCCB) is a rare and aggressive neuroendocrine tumor with a dismal prognosis and limited treatment options. As SCCB is histologically indistinguishable from small-cell lung cancer, a shared pathogenesis and cell of origin has been proposed. The aim of this study is to determine whether SCCBs arise from a preexisting urothelial carcinoma or share a molecular pathogenesis in common with small-cell lung cancer. Experimental Design: We performed an integrative analysis of 61 SCCB tumors to identify histology- and organ-specific similarities and differences. Results: SCCB has a high somatic mutational burden driven predominantly by an APOBEC-mediated mutational process. TP53, RB1 , and TERT promoter mutations were present in nearly all samples. Although these events appeared to arise early in all affected tumors and likely reflect an evolutionary branch point that may have driven small-cell lineage differentiation, they were unlikely the founding transforming event, as they were often preceded by diverse and less common driver mutations, many of which are common in bladder urothelial cancers, but not small-cell lung tumors. Most patient tumors (72%) also underwent genome doubling (GD). Although arising at different chronologic points in the evolution of the disease, GD was often preceded by biallelic mutations in TP53 with retention of two intact copies. Conclusions: Our findings indicate that small-cell cancers of the bladder and lung have a convergent but distinct pathogenesis, with SCCBs arising from a cell of origin shared with urothelial bladder cancer. Clin Cancer Res; 24(8); 1965-73. ©2017 AACR See related commentary by Oser and Jänne, p. 1775 . ©2017 American Association for Cancer Research.

Communication pitfalls of traditional history and physical write-up documentation

PubMed Central

Brown, Jeffrey L

2017-01-01

Background An unofficial standardized “write-up” outline is commonly used for documenting history and physical examinations, giving oral presentations, and teaching clinical skills. Despite general acceptance, there is an apparent discrepancy between the way clinical encounters are conducted and how they are documented. Methods Fifteen medical school websites were randomly selected from search-engine generated lists. One example of a history and physical write-up from each of six sites, one teaching outline from each of nine additional sites, and recommendations for documentation made in two commonly used textbooks were compared for similarities and differences. Results Except for minor variations in documenting background information, all sampled materials utilized the same standardized format. When the examiners’ early perceptions of the patients’ degree of illness or level of distress were described, they were categorized as “general appearance” within the physical findings. Contrary to clinical practice, none of the examples or recommendations documented these early perceptions before chief concerns and history were presented. Discussion An examiner’s initial perceptions of a patient’s affect, degree of illness, and level of distress can influence the content of the history, triage decisions, and prioritization of likely diagnoses. When chief concerns and history are shared without benefit of this information, erroneous assumptions and miscommunications can result. Conclusion This survey confirms common use of a standardized outline for documenting, communicating, and teaching history-taking and physical examination protocol. The present outline shares early observations out of clinical sequence and may provide inadequate context for accurate interpretation of chief concerns and history. Corrective actions include modifying the documentation sequence to conform to clinical practice and teaching contextual methodology for sharing patient information. PMID:28096709

Prevalence of diabetic retinopathy and diabetic macular edema in a primary care-based teleophthalmology program for American Indians and Alaskan Natives.

PubMed

Bursell, Sven-Erik; Fonda, Stephanie J; Lewis, Drew G; Horton, Mark B

2018-01-01

Diabetes and its complications are more common in American Indians and Alaska Natives (AI/AN) than other US racial/ethnic populations. Prior reports of diabetic retinopathy (DR) prevalence in AI/AN are dated, and research on diabetic macular edema (DME) is limited. This study characterizes the recent prevalence of DR and DME in AI/AN using primary care-based teleophthalmology surveillance. This is a multi-site, clinic-based, cross-sectional study of DR and DME. The sample is composed of AI /AN patients with diabetes (n = 53,998), served by the nationally distributed Indian Health Service-Joslin Vision Network Teleophthalmology Program (IHS-JVN) in primary care clinics of US Indian Health Service (IHS), Tribal, and Urban Indian health care facilities (I/T/U) from 1 November 2011 to 31 October 2016. Patients were recruited opportunistically for a retinal examination using the IHS-JVN during their regular diabetes care. The IHS-JVN used clinically validated, non-mydriatic, retinal imaging and retinopathy assessment protocols to identify the severity levels of non-proliferative diabetic retinopathy (NPDR), proliferative diabetic retinopathy (PDR), DME, and sight threatening retinopathy (STR; a composite measure). Key social-demographic (age, gender, IHS area), diabetes-related health (diabetes therapy, duration of diabetes, A1c), and imaging technology variables were examined. The analysis calculated frequencies and percentages of severity levels of disease. Prevalence of any NPDR, PDR, DME, and STR among AI/AN patients undergoing DR teleophthalmology surveillance by IHS-JVN was 17.7%, 2.3%, 2.3%, and 4.2%, respectively. Prevalence was lowest in Alaska and highest among patients with A1c >/ = 8%, duration of diabetes > 10 years, or using insulin. Prevalence of DR in this cohort was approximately half that in previous reports for AI/AN, and prevalence of DME was less than that reported in non-AI/AN populations. A similar reduction in diabetes related end-stage renal disease in the same population and time period has been reported by other researchers. Since these two diabetic complications share a common microvasculopathic mechanism, this coincident change in prevalence may also share a common basis, possibly related to improved diabetes management.

Shared decision-making, gender and new technologies.

PubMed

Zeiler, Kristin

2007-09-01

Much discussion of decision-making processes in medicine has been patient-centred. It has been assumed that there is, most often, one patient. Less attention has been given to shared decision-making processes where two or more patients are involved. This article aims to contribute to this special area. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a shared autonomous decision-making process? Why make the distinction? Examples are drawn from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed.

Shared decision making in endocrinology: present and future directions.

PubMed

Rodriguez-Gutierrez, Rene; Gionfriddo, Michael R; Ospina, Naykky Singh; Maraka, Spyridoula; Tamhane, Shrikant; Montori, Victor M; Brito, Juan P

2016-08-01

In medicine and endocrinology, there are few clinical circumstances in which clinicians can accurately predict what is best for their patients. As a result, patients and clinicians frequently have to make decisions about which there is uncertainty. Uncertainty results from limitations in the research evidence, unclear patient preferences, or an inability to predict how treatments will fit into patients' daily lives. The work that patients and clinicians do together to address the patient's situation and engage in a deliberative dialogue about reasonable treatment options is often called shared decision making. Decision aids are evidence-based tools that facilitate this process. Shared decision making is a patient-centred approach in which clinicians share information about the benefits, harms, and burden of different reasonable diagnostic and treatment options, and patients explain what matters to them in view of their particular values, preferences, and personal context. Beyond the ethical argument in support of this approach, decision aids have been shown to improve patients' knowledge about the available options, accuracy of risk estimates, and decisional comfort. Decision aids also promote patient participation in the decision-making process. Despite accumulating evidence from clinical trials, policy support, and expert recommendations in endocrinology practice guidelines, shared decision making is still not routinely implemented in endocrine practice. Additional work is needed to enrich the number of available tools and to implement them in practice workflows. Also, although the evidence from randomised controlled trials favours the use of this shared decision making in other settings, populations, and illnesses, the effect of this approach has been studied in a few endocrine disorders. Future pragmatic trials are needed to explore the effect and feasibility of shared decision making implementation into routine endocrinology and primary care practice. With the available evidence, however, endocrinologists can now start to practice shared decision making, partner with their patients, and use their expertise to formulate treatment plans that reflect patient preferences and are more likely to fit into the context of patients' lives. In this Personal View, we describe shared decision making, the evidence behind the approach, and why and how both endocrinologists and their patients could benefit from this approach. Copyright © 2016 Elsevier Ltd. All rights reserved.

Risk factors for computed tomography angiography spot sign in deep and lobar intracerebral hemorrhage are shared.

PubMed

Radmanesh, Farid; Falcone, Guido J; Anderson, Christopher D; Battey, Thomas W K; Ayres, Alison M; Vashkevich, Anastasia; McNamara, Kristen A; Schwab, Kristin; Romero, Javier M; Viswanathan, Anand; Greenberg, Steven M; Goldstein, Joshua N; Rosand, Jonathan; Brouwers, H Bart

2014-06-01

Patients with intracerebral hemorrhage (ICH) who present with a spot sign on computed tomography angiography are at increased risk of hematoma expansion and poor outcome. Because primary ICH is the acute manifestation of chronic cerebral small vessel disease, we investigated whether different clinical or imaging characteristics predict spot sign presence, using ICH location as a surrogate for arteriolosclerosis- and cerebral amyloid angiopathy-related ICH. Patients with primary ICH and available computed tomography angiography at presentation were included. Predictors of spot sign were assessed using uni- and multivariable regression, stratified by ICH location. Seven hundred forty-one patients were eligible, 335 (45%) deep and 406 (55%) lobar ICH. At least one spot sign was present in 76 (23%) deep and 102 (25%) lobar ICH patients. In multivariable regression, warfarin (odds ratio [OR], 2.42; 95% confidence interval [CI], 1.01-5.71; P=0.04), baseline ICH volume (OR, 1.20; 95% CI, 1.09-1.33, per 10 mL increase; P<0.001), and time from symptom onset to computed tomography angiography (OR, 0.89; 95% CI, 0.80-0.96, per hour; P=0.009) were associated with the spot sign in deep ICH. Predictors of spot sign in lobar ICH were warfarin (OR, 3.95; 95% CI, 1.87-8.51; P<0.001) and baseline ICH volume (OR, 1.20; 95% CI, 1.10-1.31, per 10 mL increase; P<0.001). The most potent associations with spot sign are shared between deep and lobar ICH, suggesting that the acute bleeding process that arises in the setting of different chronic small vessel diseases shares commonalities. © 2014 American Heart Association, Inc.

Valid analytical performance specifications for combined analytical bias and imprecision for the use of common reference intervals.

PubMed

Hyltoft Petersen, Per; Lund, Flemming; Fraser, Callum G; Sandberg, Sverre; Sölétormos, György

2018-01-01

Background Many clinical decisions are based on comparison of patient results with reference intervals. Therefore, an estimation of the analytical performance specifications for the quality that would be required to allow sharing common reference intervals is needed. The International Federation of Clinical Chemistry (IFCC) recommended a minimum of 120 reference individuals to establish reference intervals. This number implies a certain level of quality, which could then be used for defining analytical performance specifications as the maximum combination of analytical bias and imprecision required for sharing common reference intervals, the aim of this investigation. Methods Two methods were investigated for defining the maximum combination of analytical bias and imprecision that would give the same quality of common reference intervals as the IFCC recommendation. Method 1 is based on a formula for the combination of analytical bias and imprecision and Method 2 is based on the Microsoft Excel formula NORMINV including the fractional probability of reference individuals outside each limit and the Gaussian variables of mean and standard deviation. The combinations of normalized bias and imprecision are illustrated for both methods. The formulae are identical for Gaussian and log-Gaussian distributions. Results Method 2 gives the correct results with a constant percentage of 4.4% for all combinations of bias and imprecision. Conclusion The Microsoft Excel formula NORMINV is useful for the estimation of analytical performance specifications for both Gaussian and log-Gaussian distributions of reference intervals.

Effective Nurse Communication With Type 2 Diabetes Patients: A Review.

PubMed

Mulder, Bob C; Lokhorst, Anne Marike; Rutten, Guy E H M; van Woerkum, Cees M J

2015-08-01

Many type 2 diabetes mellitus patients have difficulties reaching optimal blood glucose control. With patients treated in primary care by nurses, nurse communication plays a pivotal role in supporting patient health. The twofold aim of the present review is to categorize common barriers to nurse-patient communication and to review potentially effective communication methods. Important communication barriers are lack of skills and self-efficacy, possibly because nurses work in a context where they have to perform biomedical examinations and then perform patient-centered counseling from a biopsychosocial approach. Training in patient-centered counseling does not seem helpful in overcoming this paradox. Rather, patient-centeredness should be regarded as a basic condition for counseling, whereby nurses and patients seek to cooperate and share responsibility based on trust. Nurses may be more successful when incorporating behavior change counseling based on psychological principles of self-regulation, for example, goal setting, incremental performance accomplishments, and action planning. © The Author(s) 2014.

Data sharing platforms for de-identified data from human clinical trials.

PubMed

Huser, Vojtech; Shmueli-Blumberg, Dikla

2018-04-01

Data sharing of de-identified individual participant data is being adopted by an increasing number of sponsors of human clinical trials. In addition to standardizing data syntax for shared trial data, semantic integration of various data elements is the focus of several initiatives that define research common data elements. This perspective article, in the first part, compares several data sharing platforms for de-identified clinical research data in terms of their size, policies and supported features. In the second part, we use a case study approach to describe in greater detail one data sharing platform (Data Share from National Institute of Drug Abuse). We present data on the past use of the platform, data formats offered, data de-identification approaches and its use of research common data elements. We conclude with a summary of current and expected future trends that facilitate secondary research use of data from completed human clinical trials.

Shared decision making, paternalism and patient choice.

PubMed

Sandman, Lars; Munthe, Christian

2010-03-01

In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship.

Patients' perceptions of sharing in decisions: a systematic review of interventions to enhance shared decision making in routine clinical practice.

PubMed

Légaré, France; Turcotte, Stéphane; Stacey, Dawn; Ratté, Stéphane; Kryworuchko, Jennifer; Graham, Ian D

2012-01-01

Shared decision making is the process in which a healthcare choice is made jointly by the health professional and the patient. Little is known about what patients view as effective or ineffective strategies to implement shared decision making in routine clinical practice. This systematic review evaluates the effectiveness of interventions to improve health professionals' adoption of shared decision making in routine clinical practice, as seen by patients. We searched electronic databases (PubMed, the Cochrane Library, EMBASE, CINAHL, and PsycINFO) from their inception to mid-March 2009. We found additional material by reviewing the reference lists of the studies found in the databases; systematic reviews of studies on shared decision making; the proceedings of various editions of the International Shared Decision Making Conference; and the transcripts of the Society for Medical Decision Making's meetings. In our study selection, we included randomized controlled trials, controlled clinical trials, controlled before-and-after studies, and interrupted time series analyses in which patients evaluated interventions to improve health professionals' adoption of shared decision making. The interventions in question consisted of the distribution of printed educational material; educational meetings; audit and feedback; reminders; and patient-mediated initiatives (e.g. patient decision aids). Two reviewers independently screened the studies and extracted data. Statistical analyses considered categorical and continuous process measures. We computed the standardized effect size for each outcome at the 95% confidence interval. The primary outcome of interest was health professionals' adoption of shared decision making as reported by patients in a self-administered questionnaire. Of the 6764 search results, 21 studies reported 35 relevant comparisons. Overall, the quality of the studies ranged from 0% to 83%. Only three of the 21 studies reported a clinically significant effect for the primary outcome that favored the intervention. The first study compared an educational meeting and a patient-mediated intervention with another patient-mediated intervention (median improvement of 74%). The second compared an educational meeting, a patient-mediated intervention, and audit and feedback with an educational meeting on an alternative topic (improvement of 227%). The third compared an educational meeting and a patient-mediated intervention with usual care (p = 0.003). All three studies were limited to the patient-physician dyad. To reduce bias, future studies should improve methods and reporting, and should analyze costs and benefits, including those associated with training of health professionals. Multifaceted interventions that include educating health professionals about sharing decisions with patients and patient-mediated interventions, such as patient decision aids, appear promising for improving health professionals' adoption of shared decision making in routine clinical practice as seen by patients.

Therapeutic advances for the tumors associated with neurofibromatosis type 1, type 2, and schwannomatosis

PubMed Central

Blakeley, Jaishri O.; Plotkin, Scott R.

2016-01-01

Neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis (SWN) are tumor-suppressor syndromes. Each syndrome is an orphan disease; however, the tumors that arise within them represent the most common tumors of the nervous system worldwide. Systematic investigation of the pathways impacted by the loss of function of neurofibromin (encoded by NF1) and merlin (encoded by NF2) have led to therapeutic advances for patients with NF1 and NF2. In the syndrome of SWN, the genetic landscape is more complex, with 2 known causative genes (SMARCB1 and LZTR1) accounting for up to 50% of familial SWN patients. The understanding of the molecular underpinnings of these syndromes is developing rapidly and offers more therapeutic options for the patients. In addition, common sporadic cancers harbor somatic alterations in NF1 (ie, glioblastoma, breast cancer, melanoma), NF2 (ie, meningioma, mesothelioma) and SMARCB1 (ie, atypical teratoid/rhabdoid tumors) such that advances in management of syndromic tumors may benefit patients both with and without germline mutations. In this review, we discuss the clinical and genetic features of NF1, NF2 and SWN, the therapeutic advances for the tumors that arise within these syndromes and the interaction between these rare tumor syndromes and the common tumors that share these mutations. PMID:26851632

Cognition and dementia in older patients with epilepsy

PubMed Central

Sen, Arjune; Capelli, Valentina

2018-01-01

Abstract With advances in healthcare and an ageing population, the number of older adults with epilepsy is set to rise substantially across the world. In developed countries the highest incidence of epilepsy is already in people over 65 and, as life expectancy increases, individuals who developed epilepsy at a young age are also living longer. Recent findings show that older persons with epilepsy are more likely to suffer from cognitive dysfunction and that there might be an important bidirectional relationship between epilepsy and dementia. Thus some people with epilepsy may be at a higher risk of developing dementia, while individuals with some forms of dementia, particularly Alzheimer’s disease and vascular dementia, are at significantly higher risk of developing epilepsy. Consistent with this emerging view, epidemiological findings reveal that people with epilepsy and individuals with Alzheimer’s disease share common risk factors. Recent studies in Alzheimer’s disease and late-onset epilepsy also suggest common pathological links mediated by underlying vascular changes and/or tau pathology. Meanwhile electrophysiological and neuroimaging investigations in epilepsy, Alzheimer’s disease, and vascular dementia have focused interest on network level dysfunction, which might be important in mediating cognitive dysfunction across all three of these conditions. In this review we consider whether seizures promote dementia, whether dementia causes seizures, or if common underlying pathophysiological mechanisms cause both. We examine the evidence that cognitive impairment is associated with epilepsy in older people (aged over 65) and the prognosis for patients with epilepsy developing dementia, with a specific emphasis on common mechanisms that might underlie the cognitive deficits observed in epilepsy and Alzheimer’s disease. Our analyses suggest that there is considerable intersection between epilepsy, Alzheimer’s disease and cerebrovascular disease raising the possibility that better understanding of shared mechanisms in these conditions might help to ameliorate not just seizures, but also epileptogenesis and cognitive dysfunction. PMID:29506031

Physician response to the United Mine Workers' cost-sharing program: the other side of the coin.

PubMed Central

Fahs, M C

1992-01-01

The effect of cost sharing on health services utilization is analyzed from a new perspective, that is, its effects on physician response to cost sharing. A primary data set was constructed using medical records and billing files from a large multispecialty group practice during the three-year period surrounding the introduction of cost sharing to the United Mine Workers Health and Retirement Fund. This same group practice also served an equally large number of patients covered by United Steelworkers' health benefit plans, for which similar utilization data were available. The questions addressed in this interinsurer study are: (1) to what extent does a physician's treatment of medically similar cases vary, following a drop in patient visits as a result of cost sharing? and (2) what is the impact, if any, on costs of care for other patients in the practice (e.g., "spillover effects" such as cost shifting)? Answers to these kinds of questions are necessary to predict the effects of cost sharing on overall health care costs. A fixed-effects model of physician service use was applied to data on episodes of treatment for all patients in a private group practice. This shows that the introduction of cost sharing to some patients in a practice does, in fact, increase the treatment costs to other patients in the same practice who remain under stable insurance plans. The analysis demonstrates that when the economic effects of cost sharing on physician service use are analyzed for all patients within a physician practice, the findings are remarkably different from those of an analysis limited to those patients directly affected by cost sharing. PMID:1563952

Shared governance: a way to improve the care in an inpatient rehabilitation facility.

PubMed

Torres, Audrey; Kunishige, Nalani; Morimoto, Denise; Hanzawa, Tracie; Ebesu, Mike; Fernandez, John; Nohara, Lynne; SanAgustin, Eliseo; Borg, Stephanie

2015-01-01

Rehabilitation care is specialized and individualized requiring effective and efficient communication to achieve optimal patient outcomes. To examine how effective implementation of shared governance could improve care delivery, promote patient-centered care, and improve patient outcomes. The shared governance approach included all members of the rehabilitation team (i.e., physical therapist, occupational therapist, speech therapist, registered nurse and nurse aide) and was implemented over 6 months. The major end products of this shared governance effort were improved staff communication, problem solving, patient outcomes, and staff satisfaction on our stroke and brain injury unit. When effectively implemented and sustained, shared governance between all rehabilitation team stakeholders can increase the effectiveness of communication along with more positive patient and staff outcomes. © 2014 Association of Rehabilitation Nurses.

Shared decision-making in an intercultural context. Barriers in the interaction between physicians and immigrant patients.

PubMed

Suurmond, Jeanine; Seeleman, Conny

2006-02-01

The objective of this exploratory paper is to describe several barriers in shared decision-making in an intercultural context. Based on the prevailing literature on intercultural communication in medical settings, four conceptual barriers were described. When the conceptual barriers were described, they were compared with the results from semi-structured interviews with purposively selected physicians (n = 18) and immigrant patients (n = 13). Physicians differed in medical discipline (GPs, company doctors, an internist, a cardiologist, a gynaecologist, and an intern) and patients had different ethnic and immigration backgrounds. The following barriers were found: (1) physician and patient may not share the same linguistic background; (2) physician and patient may not share similar values about health and illness; (3) physician and patient may not have similar role expectations; and (4) physician and patient may have prejudices and do not speak to each other in an unbiased manner. We conclude that due to these barriers, the transfer of information, the formulation of the diagnosis, and the discussion of treatment options are at stake and the shared decision-making process is impeded. Improving physician's skills to recognize the communication limitations during shared decision-making as well as improving the skills to deal with the barriers may help to ameliorate shared decision-making in an intercultural setting.

Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study in primary care.

PubMed

Hamilton, W T; Gallagher, A M; Thomas, J M; White, P D

2009-11-01

Fatigue syndromes and irritable bowel syndrome (IBS) often occur together. Explanations include being different manifestations of the same condition and simply sharing some symptoms. A matched case-control study in UK primary care, using data collected prospectively in the General Practice Research Database (GPRD). The main outcome measures were: health-care utilization, specific symptoms and diagnoses. Risk markers were divided into distant (from 3 years to 1 year before diagnosis) and recent (1 year before diagnosis). A total of 4388 patients with any fatigue syndrome were matched to two groups of patients: those attending for IBS and those attending for another reason. Infections were specific risk markers for both syndromes, with viral infections being a risk marker for a fatigue syndrome [odds ratios (ORs) 2.3-6.3], with a higher risk closer to onset, and gastroenteritis a risk for IBS (OR 1.47, compared to a fatigue syndrome). Chronic fatigue syndrome (CFS) shared more distant risk markers with IBS than other fatigue syndromes, particularly other symptom-based disorders (OR 3.8) and depressive disorders (OR 2.3), but depressive disorders were a greater risk for CFS than IBS (OR 2.4). Viral infections were more of a recent risk marker for CFS compared to IBS (OR 2.8), with gastroenteritis a greater risk for IBS (OR 2.4). Both fatigue and irritable bowel syndromes share predisposing risk markers, but triggering risk markers differ. Fatigue syndromes are heterogeneous, with CFS sharing predisposing risks with IBS, suggesting a common predisposing pathophysiology.

Under Utilization of Pancreas Transplants in Cystic Fibrosis Recipients in the United Network Organ Sharing (UNOS) Data 1987-2014.

PubMed

Usatin, D J; Perito, E R; Posselt, A M; Rosenthal, P

2016-05-01

Despite a high prevalence of pancreatic endocrine and exocrine insufficiency in cystic fibrosis (CF), pancreas transplantation is rarely reported. United Network for Organ Sharing (UNOS) data were used to examine utilization of pancreas transplant and posttransplant outcomes in CF patients. Between 1987-2014, CF patients (N = 4600) underwent 17 liver-pancreas, three lung-pancreas, one liver-lung pancreas, four kidney-pancreas, and three pancreas-only transplants. Of the 303 CF patients who received liver transplantation, 20% had CF-related diabetes (CFRD) before transplantation, and nine of those received a liver-pancreas transplant. Of 4241 CF patients who underwent lung transplantation, 33% had CFRD before transplantation, and three of those received a pancreas transplant. Of 49 CF patients who received a liver-lung transplant, 57% had CFRD before transplantation and one received a pancreas transplant. Posttransplantation diabetes developed in 7% of CF pancreas transplant recipients versus 24% of CF liver and 29% of CF lung recipients. UNOS has no data on pancreas exocrine insufficiency. Two-year posttransplantation survival was 88% after liver-pancreas transplant, 33% after lung-pancreas transplant, and 100% after pancreas-kidney and pancreas-only transplants. Diabetes is common pretransplantation and posttransplantation in CF solid organ transplant recipients, but pancreas transplantation remains rare. Further consideration of pancreas transplant in CF patients undergoing other solid organ transplant may be warranted. © Copyright 2015 The American Society of Transplantation and the American Society of Transplant Surgeons.

Shared decision making and patient decision aids: knowledge, attitudes, and practices among Hawai'i physicians.

PubMed

Alden, Dana L; Friend, John; Chun, Maria B J

2013-11-01

As the health care field moves toward patient-centered care (PCC), increasing emphasis has been placed on the benefits of patient decision aids for promoting shared decision making (SDM). This study provides a baseline measure of knowledge, attitudes, and practices (KAP) among Hawai'i's physicians with respect to patient decision aids (DAs). Physicians throughout the State of Hawai'i were invited to complete a survey assessing their knowledge, attitudes, and practices with respect to the clinical use of DAs. One hundred and seventy four valid surveys were analyzed. Reported awareness and use of DAs were low, but recognition of the benefits of SDM and openness to the use of DAs were very high. The leading perceived barriers to the implementation of DAs were lack of awareness, lack of resources, and limited physician time to learn about DA technology. However, a significant majority of the respondents reported that DAs could empower patients by improving knowledge (88%), increasing satisfaction with the consultation process (81%), and increasing compliance (74%). Among physicians currently employing DAs, use of brochures or options matrix sheets was the most common aid tool. However, leading recommended DA formats were paper-based brochures for clinic use (75%) and interactive online website programs for outside clinic use (73.5%). Given growing emphasis on the PCC model and the recognized desire of many patients to participate in the medical decision making process, positive responses toward SDM and the use of DAs by Hawai'i physicians are promising.

Integrating Engineering into K-6 Curriculum: Developing Talent in the STEM Disciplines

ERIC Educational Resources Information Center

Mann, Eric L.; Mann, Rebecca L.; Strutz, Michele L.; Duncan, Daphne; Yoon, So Yoon

2011-01-01

The fields of gifted and engineering education share many common interests, and their students share many common attributes. Infusing and making engineering implicit in the K-6 education programs creates opportunities to develop concepts, skills, and habits of the mind that are valuable in all disciplines while providing opportunities to discover…

Measuring and Sustaining the Impact of Less Commonly Taught Language Collections in a Research Library

ERIC Educational Resources Information Center

Lenkart, Joe; Teper, Thomas H.; Thacker, Mara; Witt, Steven W.

2015-01-01

To evaluate the current state of resource sharing and cooperative collection development, this paper examines the relationship between less commonly taught language collections (LCTL) and ILL services. The study examined multiple years of the University of Illinois at Urbana-Champaign's resource-sharing data. This paper provides a historical…

An Integrated Architecture to Support Hastily Formed Network (HFN)

DTIC Science & Technology

2007-12-01

17 1. Creating Awareness of the Situation (intra-organization).............17 2. Sharing Awareness Among Organizations (inter...Convergence - Sharing a Common Goal to Achieve a Common Outcome...................................................................39 b. Interdependency and...Weaknesses, Opportunities and Threat UC Unclassified UCC Unified Command Center UHF Ultra High Frequency VHF Very High Frequency VoIP Voice over

[Differences in attitude toward patient-centeredness in patients and physicians].

PubMed

Kim, Min-Jeong

2013-06-01

There have been studies on the patient-centeredness of medical students and physicians in South Korea, but no result has presented the patient-centered attitude of patients and doctors. So, this study intended to compare the attitudes of patients and doctors toward the roles that patients and physicians should play in the health care process. One hundred and fifteen doctors and 264 patients participated in this survey using a structured questionnaire, including sociodemographic data and Patient Practitioner Orientation Scale (PPOS). The PPOS comprises sharing (sharing information, take part in decision making) and caring (respecting one's feelings, interpersonal relationships) subscales. The PPOS scores of the doctors and patient were 3.02 and 3.20. In detail, the doctors' sharing and caring scores were and 3.02 and 3.48, and the those of patients were 3.14 and 3.12, respectively. This results are enough to demonstrate that patients are likely to be patient-centered with regard to sharing and that doctors tend to be patient-centered in terms of caring. The patients' desire to obtain medical information and take part in decision making (sharing) are greater than those of doctors. Doctors had more patient-centered attitude than patients in terms of respects for one's feelings and interpersonal relationships (caring).

Diagnostic criteria for schwannomatosis.

PubMed

MacCollin, M; Chiocca, E A; Evans, D G; Friedman, J M; Horvitz, R; Jaramillo, D; Lev, M; Mautner, V F; Niimura, M; Plotkin, S R; Sang, C N; Stemmer-Rachamimov, A; Roach, E S

2005-06-14

The neurofibromatoses are a diverse group of genetic conditions that share a predisposition to the development of tumors of the nerve sheath. Schwannomatosis is a recently recognized third major form of neurofibromatosis (NF) that causes multiple schwannomas without vestibular tumors diagnostic of NF2. Patients with schwannomatosis represent 2.4 to 5% of all patients requiring schwannoma resection and approximately one third of patients with schwannomatosis have anatomically localized disease with tumors limited to a single limb or segment of spine. Epidemiologic studies suggest that schwannomatosis is as common as NF2, but that familial occurrence is inexplicably rare. Patients with schwannomatosis overwhelmingly present with pain, and pain remains the primary clinical problem and indication for surgery. Diagnostic criteria for schwannomatosis are needed for both clinicians and researchers, but final diagnostic certainly will await the identification of the schwannomatosis locus itself.

Family functioning and perceived support from nurses during cancer treatment among Danish and Australian patients and their families.

PubMed

Dieperink, Karin B; Coyne, Elisabeth; Creedy, Debra K; Østergaard, Birte

2018-01-01

This study aimed to compare family functioning and perceptions of support from nurses among Danish and Australian adult oncology patients and family members. Family can have a strong influence on the health of individuals, providing support during a health crisis such as cancer. However, family functioning and supportive care from nurses may vary across cultures and settings. A descriptive, cross-sectional comparative design with patients and family members from Denmark and Australia. Participants were asked to fill in translated versions of the Iceland-Expressive Family Functioning Questionnaire (ICE-EFFQ) and Iceland-Expressive Family Perceived Support Questionnaire (ICE-FPSQ). In total, 232 participants were recruited. The Danish cohort consisted of 56 patients and 54 family members. The Australian cohort consisted of 83 patients and 39 family members. Mean age was 59 years. No significant differences were found between Danish and Australian families. However, compared to patients, family members reported significantly lower overall family functioning, expressive emotions and communication, as well as less emotional support from nurses. Family functioning was comparable between Denmark and Australia. Family members reported less emotional support than patients. Nurses need to consider the patient and the family as a unit with complex needs that require monitoring and attention during oncology treatment. Families supporting a member with cancer have significant and often unmet needs. Assessment, information-sharing and health education need to include the family. Supportive care information may be shared between Denmark and Australia and inspires the development of common guidelines for optimal family nursing practice. © 2017 John Wiley & Sons Ltd.

Evidence for apolipoprotein E {epsilon}4 association in early-onset Alzheimer`s patients with late-onset relatives

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

Perez-Tur, J.; Delacourte, A.; Chartier-Harlin, M.C.

1995-12-18

Recently several reports have extended the apolipoprotein E (APOE) {epsilon}4 association found in late-onset Alzheimer`s disease (LOAD) patients to early-onset (EO) AD patients. We have studied this question in a large population of 119 EOAD patients (onset {<=}60 years) in which family history was carefully assessed and in 109 controls. We show that the APOE {epsilon}A allele frequency is increased only in the subset of patients who belong to families where LOAD secondary cases are present. Our sampling scheme permits us to demonstrate that, for an individual, bearing at least one {epsilon}4 allele increases both the risk of AD beforemore » age 60 and the probability of belonging to a family with late-onset affected subjects. Our results suggest that a subset of EOAD cases shares a common determinism with LOAD cases. 19 refs., 3 tabs.« less

Pathology Image-Sharing on Social Media: Recommendations for Protecting Privacy While Motivating Education.

PubMed

Crane, Genevieve M; Gardner, Jerad M

2016-08-01

There is a rising interest in the use of social media by pathologists. However, the use of pathology images on social media has been debated, particularly gross examination, autopsy, and dermatologic condition photographs. The immediacy of the interactions, increased interest from patients and patient groups, and fewer barriers to public discussion raise additional considerations to ensure patient privacy is protected. Yet these very features all add to the power of social media for educating other physicians and the nonmedical public about disease and for creating better understanding of the important role of pathologists in patient care. The professional and societal benefits are overwhelmingly positive, and we believe the potential for harm is minimal provided common sense and routine patient privacy principles are utilized. We lay out ethical and practical guidelines for pathologists who use social media professionally. © 2016 American Medical Association. All Rights Reserved.

Clinical Trial Data as Public Goods: Fair Trade and the Virtual Knowledge Bank as a Solution to the Free Rider Problem - A Framework for the Promotion of Innovation by Facilitation of Clinical Trial Data Sharing among Biopharmaceutical Companies in the Era of Omics and Big Data.

PubMed

Evangelatos, Nikolaos; Reumann, Matthias; Lehrach, Hans; Brand, Angela

2016-01-01

Knowledge in the era of Omics and Big Data has been increasingly conceptualized as a public good. Sharing of de-identified patient data has been advocated as a means to increase confidence and public trust in the results of clinical trials. On the other hand, research has shown that the current research and development model of the biopharmaceutical industry has reached its innovation capacity. In response to that, the biopharmaceutical industry has adopted open innovation practices, with sharing of clinical trial data being among the most interesting ones. However, due to the free rider problem, clinical trial data sharing among biopharmaceutical companies could undermine their innovativeness. Based on the theory of public goods, we have developed a commons arrangement and devised a model, which enables secure and fair clinical trial data sharing over a Virtual Knowledge Bank based on a web platform. Our model uses data as a virtual currency and treats knowledge as a club good. Fair sharing of clinical trial data over the Virtual Knowledge Bank has positive effects on the innovation capacity of the biopharmaceutical industry without compromising the intellectual rights, proprietary interests and competitiveness of the latter. The Virtual Knowledge Bank is a sustainable and self-expanding model for secure and fair clinical trial data sharing that allows for sharing of clinical trial data, while at the same time it increases the innovation capacity of the biopharmaceutical industry. © 2016 S. Karger AG, Basel.

Assessing the Effects of Financial Literacy on Patient Engagement.

PubMed

Meyer, Melanie A; Hudak, Ronald P

2016-07-01

We investigated the relationship between financial literacy and patient engagement while considering the possible interaction effects due to patient financial responsibility and patient-physician shared decision making, and the impact of personal attributes. Participants consisted of an Internet-based sample of American adults (N = 160). Hierarchical multiple linear regression analysis was conducted to examine the relationship of the study variables on patient engagement. We found that patient financial responsibility (β = -.19, p < .05) and patient-physician shared decision-making (β = .17, p < .05) predicted patient engagement. However, there was no statistically significant relationship between patient financial literacy and patient engagement; moreover, the moderation effects of patient financial responsibility and shared decision making with financial literacy also were not statistically significant. Increasing patient financial responsibility and patient-physician shared decision making can impact patient engagement. Understanding the predictors of patient engagement and the factors that influence financial behaviors may allow for the development of interventions to enable patients to make better healthcare decisions, and ultimately, improve health outcomes.

Designing for Global Data Sharing, Designing for Educational Transformation

ERIC Educational Resources Information Center

Adams, Robin S.; Radcliffe, David; Fosmire, Michael

2016-01-01

This paper provides an example of a global data sharing project with an educational transformation agenda. This agenda shaped both the design of the shared dataset and the experience of sharing the common dataset to support multiple perspective inquiry and enable integrative and critically reflexive research-to-practice dialogue. The shared…

Shared Decision-Making for Nursing Practice: An Integrative Review

PubMed Central

Truglio-Londrigan, Marie; Slyer, Jason T.

2018-01-01

Background: Shared decision-making has received national and international interest by providers, educators, researchers, and policy makers. The literature on shared decision-making is extensive, dealing with the individual components of shared decision-making rather than a comprehensive process. This view of shared decision-making leaves healthcare providers to wonder how to integrate shared decision-making into practice. Objective: To understand shared decision-making as a comprehensive process from the perspective of the patient and provider in all healthcare settings. Methods: An integrative review was conducted applying a systematic approach involving a literature search, data evaluation, and data analysis. The search included articles from PubMed, CINAHL, the Cochrane Central Register of Controlled Trials, and PsycINFO from 1970 through 2016. Articles included quantitative experimental and non-experimental designs, qualitative, and theoretical articles about shared decision-making between all healthcare providers and patients in all healthcare settings. Results: Fifty-two papers were included in this integrative review. Three categories emerged from the synthesis: (a) communication/ relationship building; (b) working towards a shared decision; and (c) action for shared decision-making. Each major theme contained sub-themes represented in the proposed visual representation for shared decision-making. Conclusion: A comprehensive understanding of shared decision-making between the nurse and the patient was identified. A visual representation offers a guide that depicts shared decision-making as a process taking place during a healthcare encounter with implications for the continuation of shared decisions over time offering patients an opportunity to return to the nurse for reconsiderations of past shared decisions. PMID:29456779

Prevalence and consequences of the dual diagnosis of substance abuse and severe mental illness.

PubMed

Buckley, Peter F

2006-01-01

The co-occurrence of a severe mental illness and a substance use or abuse disorder is common in the United States as well as internationally and could be considered as more the expectation than the exception when assessing patients with serious mental illness. Substance use disorders can occur at any phase of the mental illness, perhaps even inducing psychosis. Causes of this comorbidity may include self-medication, genetic vulnerability, environment or lifestyle, underlying shared origins, and/or a common neural substrate. The consequences of dual diagnosis include poor medication compliance, physical comorbidities and poor health, poor self-care, increased suicide risk or aggression, increased sexual behavior, and possible incarceration. All of these factors contribute to a greater health burden, which reduces the health care system's capacity to adequately treat patients. Therefore, screening, assessment, and integrated treatment plans for dual diagnosis that can address both the addiction disorder and the mental illness are recommended in order to provide accurate treatment, after-care, and other health care to accommodate patients' social and vocational needs.

An evaluation of the current state of genomic data privacy protection technology and a roadmap for the future.

PubMed

Malin, Bradley A

2005-01-01

The incorporation of genomic data into personal medical records poses many challenges to patient privacy. In response, various systems for preserving patient privacy in shared genomic data have been developed and deployed. Although these systems de-identify the data by removing explicit identifiers (e.g., name, address, or Social Security number) and incorporate sound security design principles, they suffer from a lack of formal modeling of inferences learnable from shared data. This report evaluates the extent to which current protection systems are capable of withstanding a range of re-identification methods, including genotype-phenotype inferences, location-visit patterns, family structures, and dictionary attacks. For a comparative re-identification analysis, the systems are mapped to a common formalism. Although there is variation in susceptibility, each system is deficient in its protection capacity. The author discovers patterns of protection failure and discusses several of the reasons why these systems are susceptible. The analyses and discussion within provide guideposts for the development of next-generation protection methods amenable to formal proofs.

An Evaluation of the Current State of Genomic Data Privacy Protection Technology and a Roadmap for the Future

PubMed Central

Malin, Bradley A.

2005-01-01

The incorporation of genomic data into personal medical records poses many challenges to patient privacy. In response, various systems for preserving patient privacy in shared genomic data have been developed and deployed. Although these systems de-identify the data by removing explicit identifiers (e.g., name, address, or Social Security number) and incorporate sound security design principles, they suffer from a lack of formal modeling of inferences learnable from shared data. This report evaluates the extent to which current protection systems are capable of withstanding a range of re-identification methods, including genotype–phenotype inferences, location–visit patterns, family structures, and dictionary attacks. For a comparative re-identification analysis, the systems are mapped to a common formalism. Although there is variation in susceptibility, each system is deficient in its protection capacity. The author discovers patterns of protection failure and discusses several of the reasons why these systems are susceptible. The analyses and discussion within provide guideposts for the development of next-generation protection methods amenable to formal proofs. PMID:15492030

Shared decision making in chronic care in the context of evidence based practice in nursing.

PubMed

Friesen-Storms, Jolanda H H M; Bours, Gerrie J J W; van der Weijden, Trudy; Beurskens, Anna J H M

2015-01-01

In the decision-making environment of evidence-based practice, the following three sources of information must be integrated: research evidence of the intervention, clinical expertise, and the patient's values. In reality, evidence-based practice usually focuses on research evidence (which may be translated into clinical practice guidelines) and clinical expertise without considering the individual patient's values. The shared decision-making model seems to be helpful in the integration of the individual patient's values in evidence-based practice. We aim to discuss the relevance of shared decision making in chronic care and to suggest how it can be integrated with evidence-based practice in nursing. We start by describing the following three possible approaches to guide the decision-making process: the paternalistic approach, the informed approach, and the shared decision-making approach. Implementation of shared decision making has gained considerable interest in cases lacking a strong best-treatment recommendation, and when the available treatment options are equivalent to some extent. We discuss that in chronic care it is important to always invite the patient to participate in the decision-making process. We delineate the following six attributes of health care interventions in chronic care that influence the degree of shared decision making: the level of research evidence, the number of available intervention options, the burden of side effects, the impact on lifestyle, the patient group values, and the impact on resources. Furthermore, the patient's willingness to participate in shared decision making, the clinical expertise of the nurse, and the context in which the decision making takes place affect the shared decision-making process. A knowledgeable and skilled nurse with a positive attitude towards shared decision making—integrated with evidence-based practice—can facilitate the shared decision-making process. We conclude that nurses as well as other health care professionals in chronic care should integrate shared decision making with evidence-based practice to deliver patient-centred care. Copyright © 2014 Elsevier Ltd. All rights reserved.

Can there be a moral obligation to participate in biomedical research?

PubMed

Seiler, Christian

2018-04-01

In clinical medicine, the moral obligation to care for the individual patient is absolute. Patient care means at least and by negative terms to minimize any risk of treatment. In this context, the question arises about the compatibility of clinical ethics and human biomedical research ethics. Or conversely, is there a common ground between the two? At the opposite end of the field between clinical ethics and biomedical research ethics is the proposal of an obligation to participate in biomedical research, which is argued for on the basis of biomedical knowledge being a public good available to the community as a whole. While patient accrual during a clinical investigation would certainly be facilitated by obligatory research participation, and the data obtained would be-at first sight-more representative for the population studied, the still feasible refusal to participate would be stigmatizing and as such detrimental for the patient-physician relation. This essay seeks to provide a reply to the titled question by focusing on aspects such as individual vs common medical claims, shared grounds between the two and an important document of medical research ethics, that is the Nuremberg code. © 2018 Stichting European Society for Clinical Investigation Journal Foundation.

Comprehensive Gene expression meta-analysis and integrated bioinformatic approaches reveal shared signatures between thrombosis and myeloproliferative disorders

PubMed Central

Jha, Prabhash Kumar; Vijay, Aatira; Sahu, Anita; Ashraf, Mohammad Zahid

2016-01-01

Thrombosis is a leading cause of morbidity and mortality in patients with myeloproliferative disorders (MPDs), particularly polycythemia vera (PV) and essential thrombocythemia (ET). Despite the attempts to establish a link between them, the shared biological mechanisms are yet to be characterized. An integrated gene expression meta-analysis of five independent publicly available microarray data of the three diseases was conducted to identify shared gene expression signatures and overlapping biological processes. Using INMEX bioinformatic tool, based on combined Effect Size (ES) approaches, we identified a total of 1,157 differentially expressed genes (DEGs) (697 overexpressed and 460 underexpressed genes) shared between the three diseases. EnrichR tool’s rich library was used for comprehensive functional enrichment and pathway analysis which revealed “mRNA Splicing” and “SUMO E3 ligases SUMOylate target proteins” among the most enriched terms. Network based meta-analysis identified MYC and FN1 to be the most highly ranked hub genes. Our results reveal that the alterations in biomarkers of the coagulation cascade like F2R, PROS1, SELPLG and ITGB2 were common between the three diseases. Interestingly, the study has generated a novel database of candidate genetic markers, pathways and transcription factors shared between thrombosis and MPDs, which might aid in the development of prognostic therapeutic biomarkers. PMID:27892526

Shared Genetics and Couple-Associated Environment Are Major Contributors to the Risk of Both Clinical and Self-Declared Depression.

PubMed

Zeng, Yanni; Navarro, Pau; Xia, Charley; Amador, Carmen; Fernandez-Pujals, Ana M; Thomson, Pippa A; Campbell, Archie; Nagy, Reka; Clarke, Toni-Kim; Hafferty, Jonathan D; Smith, Blair H; Hocking, Lynne J; Padmanabhan, Sandosh; Hayward, Caroline; MacIntyre, Donald J; Porteous, David J; Haley, Chris S; McIntosh, Andrew M

2016-12-01

Both genetic and environmental factors contribute to risk of depression, but estimates of their relative contributions are limited. Commonalities between clinically-assessed major depressive disorder (MDD) and self-declared depression (SDD) are also unclear. Using data from a large Scottish family-based cohort (GS:SFHS, N=19,994), we estimated the genetic and environmental variance components for MDD and SDD. The components representing the genetic effect associated with genome-wide common genetic variants (SNP heritability), the additional pedigree-associated genetic effect and non-genetic effects associated with common environments were estimated in a linear mixed model (LMM). Both MDD and SDD had significant contributions from components representing the effect from common genetic variants, the additional genetic effect associated with the pedigree and the common environmental effect shared by couples. The estimate of correlation between SDD and MDD was high (r=1.00, se=0.20) for common-variant-associated genetic effect and lower for the additional genetic effect from the pedigree (r=0.57, se=0.08) and the couple-shared environmental effect (r=0.53, se=0.22). Both genetics and couple-shared environmental effects were major factors influencing liability to depression. SDD may provide a scalable alternative to MDD in studies seeking to identify common risk variants. Rarer variants and environmental effects may however differ substantially according to different definitions of depression. Copyright © 2016 The Authors. Published by Elsevier B.V. All rights reserved.

Shared Decision-Making and Patient Empowerment in Preventive Cardiology.

PubMed

Kambhampati, Swetha; Ashvetiya, Tamara; Stone, Neil J; Blumenthal, Roger S; Martin, Seth S

2016-05-01

Shared decision-making, central to evidence-based medicine and good patient care, begins and ends with the patient. It is the process by which a clinician and a patient jointly make a health decision after discussing options, potential benefits and harms, and considering the patient's values and preferences. Patient empowerment is crucial to shared decision-making and occurs when a patient accepts responsibility for his or her health. They can then learn to solve their own problems with information and support from professionals. Patient empowerment begins with the provider acknowledging that patients are ultimately in control of their care and aims to increase a patient's capacity to think critically and make autonomous, informed decisions about their health. This article explores the various components of shared decision-making in scenarios such as hypertension and hyperlipidemia, heart failure, and diabetes. It explores barriers and the potential for improving medication adherence, disease awareness, and self-management of chronic disease.

The benefits, risks and costs of privacy: patient preferences and willingness to pay.

PubMed

Trachtenbarg, David E; Asche, Carl; Ramsahai, Shweta; Duling, Joy; Ren, Jinma

2017-05-01

Multiple surveys show that patients want medical privacy; however, there are costs to maintaining privacy. There are also risks if information is not shared. A review of previous surveys found that most surveys asked questions about patient's privacy concerns and willingness to share their medical information. We found only one study that asked about sharing medical information for better care and no survey that asked patients about the risk, cost or comparison between medical privacy and privacy in other areas. To fill this gap, we designed a survey to: (1) compare medical privacy preferences to privacy preferences in other areas; (2) measure willingness to pay the cost of additional privacy measures; and (3) measure willingness to accept the risks of not sharing information. A total of 834 patients attending physician offices at 14 sites completed all or part of an anonymous questionnaire. Over 95% of patients were willing to share all their medical information with their treating physicians. There was no difference in willingness to share between primary care and specialty sites including psychiatry and an HIV clinic. In our survey, there was no difference in sharing preference between standard medical information and information with additional legal protections including genetic testing, drug/alcohol treatment and HIV results. Medical privacy was ranked lower than sharing social security and credit card numbers, but was deemed more private than other information including tax returns and handgun purchases. There was no statistical difference for any questions by site except for HIV/AIDS clinic patients ranking privacy of the medical record more important than reducing high medical costs and risk of medical errors (p < .05). Most patients were willing to spend a modest amount of additional time for privacy, but few were willing to pay more for additional medical privacy. Most patients were unwilling to take on additional risks to keep medical information hidden. Patients were very willing to share medical information with their providers. They were able to see the importance of sharing medical information to provide the best possible care. They were unwilling to hide information from providers if there was increased medical risk. Patients were willing to spend additional time for privacy, but most were unwilling to spend extra money. Sixty-eight percent of patients favored reducing medical costs over privacy.

Collaboration for rare disease drug discovery research.

PubMed

Litterman, Nadia K; Rhee, Michele; Swinney, David C; Ekins, Sean

2014-01-01

Rare disease research has reached a tipping point, with the confluence of scientific and technologic developments that if appropriately harnessed, could lead to key breakthroughs and treatments for this set of devastating disorders. Industry-wide trends have revealed that the traditional drug discovery research and development (R&D) model is no longer viable, and drug companies are evolving their approach. Rather than only pursue blockbuster therapeutics for heterogeneous, common diseases, drug companies have increasingly begun to shift their focus to rare diseases. In academia, advances in genetics analyses and disease mechanisms have allowed scientific understanding to mature, but the lack of funding and translational capability severely limits the rare disease research that leads to clinical trials. Simultaneously, there is a movement towards increased research collaboration, more data sharing, and heightened engagement and active involvement by patients, advocates, and foundations. The growth in networks and social networking tools presents an opportunity to help reach other patients but also find researchers and build collaborations. The growth of collaborative software that can enable researchers to share their data could also enable rare disease patients and foundations to manage their portfolio of funded projects for developing new therapeutics and suggest drug repurposing opportunities. Still there are many thousands of diseases without treatments and with only fragmented research efforts. We will describe some recent progress in several rare diseases used as examples and propose how collaborations could be facilitated. We propose that the development of a center of excellence that integrates and shares informatics resources for rare diseases sponsored by all of the stakeholders would help foster these initiatives.

Collaboration for rare disease drug discovery research

PubMed Central

Litterman, Nadia K.; Rhee, Michele; Swinney, David C.; Ekins, Sean

2014-01-01

Rare disease research has reached a tipping point, with the confluence of scientific and technologic developments that if appropriately harnessed, could lead to key breakthroughs and treatments for this set of devastating disorders. Industry-wide trends have revealed that the traditional drug discovery research and development (R&D) model is no longer viable, and drug companies are evolving their approach. Rather than only pursue blockbuster therapeutics for heterogeneous, common diseases, drug companies have increasingly begun to shift their focus to rare diseases. In academia, advances in genetics analyses and disease mechanisms have allowed scientific understanding to mature, but the lack of funding and translational capability severely limits the rare disease research that leads to clinical trials. Simultaneously, there is a movement towards increased research collaboration, more data sharing, and heightened engagement and active involvement by patients, advocates, and foundations. The growth in networks and social networking tools presents an opportunity to help reach other patients but also find researchers and build collaborations. The growth of collaborative software that can enable researchers to share their data could also enable rare disease patients and foundations to manage their portfolio of funded projects for developing new therapeutics and suggest drug repurposing opportunities. Still there are many thousands of diseases without treatments and with only fragmented research efforts. We will describe some recent progress in several rare diseases used as examples and propose how collaborations could be facilitated. We propose that the development of a center of excellence that integrates and shares informatics resources for rare diseases sponsored by all of the stakeholders would help foster these initiatives. PMID:25685324

Repeated, Close Physician Coronary Artery Bypass Grafting Teams Associated with Greater Teamwork.

PubMed

Everson, Jordan; Funk, Russell J; Kaufman, Samuel R; Owen-Smith, Jason; Nallamothu, Brahmajee K; Pagani, Francis D; Hollingsworth, John M

2018-04-01

To determine whether observed patterns of physician interaction around shared patients are associated with higher levels of teamwork as perceived by physicians. Michigan Medicare beneficiaries who underwent coronary artery bypass grafting (CABG) procedures at 24 hospitals in the state between 2008 and 2011. We assessed hospital teamwork using the teamwork climate scale in the Safety Attitudes Questionnaire. After aggregating across CABG discharges at these hospitals, we mapped the physician referral networks (including both surgeons and nonsurgeons) that served them and measured three network properties: (1) reinforcement, (2) clustering, and (3) density. We then used multilevel regression models to identify associations between network properties and teamwork at the hospitals on which the networks were anchored. In hospitals where physicians repeatedly cared for patients with the same colleagues, physicians perceived better teamwork (β-reinforcement = 3.28, p = .003). When physicians who worked together also had other colleagues in common, the reported teamwork was stronger (β clustering = 1.71, p = .001). Reported teamwork did not change when physicians worked with a higher proportion of other physicians at the hospital (β density = -0.58, p = .64). In networks with higher levels of reinforcement and clustering, physicians perceive stronger teamwork, perhaps because the strong ties between them create a shared understanding; however, sharing patients with more physicians overall (i.e., density) did not lead to stronger teamwork. Clinical and organizational leaders may consider designing the structure of clinical teams to increase interactions with known colleagues and repeated interactions between providers. © Health Research and Educational Trust.

Privacy Policy Implementation on the Nation-Wide EHR in Japan for Hospitals and Patients.

PubMed

Kume, Naoto; Kobayashi, Shinji; Araki, Kenji; Yoshihara, Hiroyuki

2017-01-01

Shared clinical information is an important contribution to regional medicine. Clinical information sharing with patients is also recommended to motivate patients and promote health. On the other hand, the threat of information leaks, caused by internet connected records, is critical to hospitals. The traditional approach is complete isolation of hospital networks, instead of information sharing. The authors propose methods here to maximize information sharing by following hospital preferences for electronic health records.

The transcriptome and miRNome profiling of glioblastoma tissues and peritumoral regions highlights molecular pathways shared by tumors and surrounding areas and reveals differences between short-term and long-term survivors

PubMed Central

Fazi, Barbara; Felsani, Armando; Grassi, Luigi; Moles, Anna; D'Andrea, Daniel; Toschi, Nicola; Sicari, Daria; De Bonis, Pasquale; Anile, Carmelo; Guerrisi, Maria Giovanna; Luca, Emilia; Farace, Maria Giulia; Maira, Giulio

2015-01-01

Glioblastoma multiforme (GBM) is the most common and deadliest primary brain tumor, driving patients to death within 15 months after diagnosis (short term survivors, ST), with the exception of a small fraction of patients (long term survivors, LT) surviving longer than 36 months. Here we present deep sequencing data showing that peritumoral (P) areas differ from healthy white matter, but share with their respective frankly tumoral (C) samples, a number of mRNAs and microRNAs representative of extracellular matrix remodeling, TGFβ and signaling, of the involvement of cell types different from tumor cells but contributing to tumor growth, such as microglia or reactive astrocytes. Moreover, we provide evidence about RNAs differentially expressed in ST vs LT samples, suggesting the contribution of TGF-β signaling in this distinction too. We also show that the edited form of miR-376c-3p is reduced in C vs P samples and in ST tumors compared to LT ones. As a whole, our study provides new insights into the still puzzling distinction between ST and LT tumors, and sheds new light onto that “grey” zone represented by the area surrounding the tumor, which we show to be characterized by the expression of several molecules shared with the proper tumor mass. PMID:26188123

The transcriptome and miRNome profiling of glioblastoma tissues and peritumoral regions highlights molecular pathways shared by tumors and surrounding areas and reveals differences between short-term and long-term survivors.

PubMed

Fazi, Barbara; Felsani, Armando; Grassi, Luigi; Moles, Anna; D'Andrea, Daniel; Toschi, Nicola; Sicari, Daria; De Bonis, Pasquale; Anile, Carmelo; Guerrisi, Maria Giovanna; Luca, Emilia; Farace, Maria Giulia; Maira, Giulio; Ciafré, Silvia Anna; Mangiola, Annunziato

2015-09-08

Glioblastoma multiforme (GBM) is the most common and deadliest primary brain tumor, driving patients to death within 15 months after diagnosis (short term survivors, ST), with the exception of a small fraction of patients (long term survivors, LT) surviving longer than 36 months. Here we present deep sequencing data showing that peritumoral (P) areas differ from healthy white matter, but share with their respective frankly tumoral (C) samples, a number of mRNAs and microRNAs representative of extracellular matrix remodeling, TGFβ and signaling, of the involvement of cell types different from tumor cells but contributing to tumor growth, such as microglia or reactive astrocytes. Moreover, we provide evidence about RNAs differentially expressed in ST vs LT samples, suggesting the contribution of TGF-β signaling in this distinction too. We also show that the edited form of miR-376c-3p is reduced in C vs P samples and in ST tumors compared to LT ones. As a whole, our study provides new insights into the still puzzling distinction between ST and LT tumors, and sheds new light onto that "grey" zone represented by the area surrounding the tumor, which we show to be characterized by the expression of several molecules shared with the proper tumor mass.

Applying Triple-Matrix Masking for Privacy Preserving Data Collection and Sharing in HIV Studies.

PubMed

Pei, Qinglin; Chen, Shigang; Xiao, Yao; Wu, Samuel S

2016-01-01

Many HIV research projects are plagued by the high missing rate of selfreported information during data collection. Also, due to the sensitive nature of the HIV research data, privacy protection is always a concern for data sharing in HIV studies. This paper applies a data masking approach, called triple-matrix masking [1], to the context of HIV research for ensuring privacy protection during the process of data collection and data sharing. Using a set of generated HIV patient data, we show step by step how the data are randomly transformed (masked) before leaving the patients' individual data collection device (which ensures that nobody sees the actual data) and how the masked data are further transformed by a masking service provider and a data collector. We demonstrate that the masked data retain statistical utility of the original data, yielding the exactly same inference results in the planned logistic regression on the effect of age on the adherence to antiretroviral therapy and in the Cox proportional hazard model for the age effect on time to viral load suppression. Privacy-preserving data collection method may help resolve the privacy protection issue in HIV research. The individual sensitive data can be completely hidden while the same inference results can still be obtained from the masked data, with the use of common statistical analysis methods.

Improved obstetric safety through programmatic collaboration.

PubMed

Goffman, Dena; Brodman, Michael; Friedman, Arnold J; Minkoff, Howard; Merkatz, Irwin R

2014-01-01

Healthcare safety and quality are critically important issues in obstetrics, and society, healthcare providers, patients and insurers share a common goal of working toward safer practice, and are continuously seeking strategies to facilitate improvements. To this end, 4 New York City voluntary hospitals with large maternity services initiated a unique collaborative quality improvement program. It was facilitated by their common risk management advisors, FOJP Service Corporation, and their professional liability insurer, Hospitals Insurance Company. Under the guidance of 4 obstetrics and gynecology departmental chairmen, consensus best practices for obstetrics were developed which included: implementation of evidence based protocols with audit and feedback; standardized educational interventions; mandatory electronic fetal monitoring training; and enhanced in-house physician coverage. Each institution developed unique safety related expertise (development of electronic documentation, team training, and simulation education), and experiences were shared across the collaborative. The collaborative group developed robust systems for audit of outcomes and documentation quality, as well as enforcement mechanisms. Ongoing feedback to providers served as a key component of the intervention. The liability carrier provided financial support for these patient safety innovations. As a result of the interventions, the overall AOI for our institutions decreased 42% from baseline (January-June 2008) to the most recently reviewed time period (July-December 2011) (10.7% vs 6.2%, p < 0.001). The Weighted Adverse Outcome Score (WAOS) also decreased during the same time period (3.9 vs 2.3, p = 0.001.) Given the improved outcomes noted, our unique program and the process by which it was developed are described in the hopes that others will recognize collaborative partnering with or without insurers as an opportunity to improve obstetric patient safety. © 2014 American Society for Healthcare Risk Management of the American Hospital Association.

The HTA Core Model®-10 Years of Developing an International Framework to Share Multidimensional Value Assessment.

PubMed

Kristensen, Finn Børlum; Lampe, Kristian; Wild, Claudia; Cerbo, Marina; Goettsch, Wim; Becla, Lidia

2017-02-01

The HTA Core Model ® as a science-based framework for assessing dimensions of value was developed as a part of the European network for Health Technology Assessment project in the period 2006 to 2008 to facilitate production and sharing of health technology assessment (HTA) information, such as evidence on efficacy and effectiveness and patient aspects, to inform decisions. It covers clinical value as well as organizational, economic, and patient aspects of technologies and has been field-tested in two consecutive joint actions in the period 2010 to 2016. A large number of HTA institutions were involved in the work. The model has undergone revisions and improvement after iterations of piloting and can be used in a local, national, or international context to produce structured HTA information that can be taken forward by users into their own frameworks to fit their specific needs when informing decisions on technology. The model has a broad scope and offers a common ground to various stakeholders through offering a standard structure and a transparent set of proposed HTA questions. It consists of three main components: 1) the HTA ontology, 2) methodological guidance, and 3) a common reporting structure. It covers domains such as effectiveness, safety, and economics, and also includes domains covering organizational, patient, social, and legal aspects. There is a full model and a focused rapid relative effectiveness assessment model, and a third joint action is to continue till 2020. The HTA Core Model is now available for everyone around the world as a framework for assessing value. Copyright © 2017 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

[Wild-type transthyretin-related cardiac amyloidosis and degenerative aortic stenosis: Two inter-related pathologies in the elderly].

PubMed

Calero Núñez, Sofía; Tercero Martínez, Antonia; García López, Juan Carlos; Jiménez-Mazuecos, Jesús

Wild-type transthyretin-related cardiac amyloidosis (ATTRwt) and degenerative aortic stenosis share a common demographic and clinical profile. It was recently suggested that some of the complications arising during and after transcatheter aortic valve replacement (TAVR) could be due to a co-existing cardiac amyloidosis. In a series of autopsies of patients who had undergone TAVR, researchers found ATTR amyloidosis in one third of the cases. A report is presented on two patients with aortic stenosis who were diagnosed with ATTRwt when they were about to undergo a TAVI. ATTRwt is a slowly progressing disease so we need to review the decisions on the therapeutic approach in these patients. Copyright © 2016 SEGG. Publicado por Elsevier España, S.L.U. All rights reserved.

Elevated troponin in patients with acute stroke - Is it a true heart attack?

PubMed

Dous, George V; Grigos, Angela C; Grodman, Richard

2017-09-01

Although the prognostic value of a positive troponin in an acute stroke patient is still uncertain, it is a commonly encountered clinical situation given that Ischemic Heart Disease (IHD) and cerebrovascular disease (CVD) frequently co-exist in the same patient and share similar risk factors. Our objectives in this review are to (1) identify the biologic relationship between acute cerebrovascular stroke and elevated troponin levels, (2) determine the pathophysiologic differences between positive troponin in the setting of acute stroke versus acute myocardial infarction (AMI), and (3) examine whether positive troponin in the setting of acute stroke has prognostic significance. We also will provide an insight analysis of some of the available studies and will provide guidance for a management approach based on the available data according to the current guidelines.

Patient preferences for single rooms or shared accommodation in a district general hospital.

PubMed

Florey, L; Flynn, R; Isles, C

2009-05-01

To determine whether patients who have used a Scottish district general hospital would prefer single or shared accommodation on a future admission. We surveyed 80 in-patients in January 2008 in order to obtain 20 medical and 20 surgical patients in single rooms and the same number in shared accommodation. Each patient received a seven point questionnaire that had been validated in another centre. Forty four men and 36 women, median 64 years, who had been in hospital for a median of 4.5 days (range 1 to 53 days) participated in the survey. Seventy per cent of patients in shared and 40% of patients in single rooms said they would prefer shared accommodation during a future hospital admission. Those expressing a preference for shared accommodation were older (median age 68 versus 58 years) and had been in hospital for longer (median 5.5 versus 3.5 days) than those who said they would prefer a single room. It is likely that the desire for company among older people who have to spend a week or more in hospital is driving the responses we obtained. Our findings do not support claims that the argument in favour of 100% single rooms is 'overwhelming'.

How is shared decision-making defined among African-Americans with diabetes?

PubMed

Peek, Monica E; Quinn, Michael T; Gorawara-Bhat, Rita; Odoms-Young, Angela; Wilson, Shannon C; Chin, Marshall H

2008-09-01

This study investigates how shared decision-making (SDM) is defined by African-American patients with diabetes, and compares patients' conceptualization of SDM with the Charles model. We utilized race-concordant interviewers/moderators to conduct in-depth interviews and focus groups among a purposeful sample of African-American patients with diabetes. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was done using an iterative process and each transcription was independently coded by two members of the research team. Although the conceptual domains were similar, patient definitions of what it means to "share" in the decision-making process differed significantly from the Charles model of SDM. Patients stressed the value of being able to "tell their story and be heard" by physicians, emphasized the importance of information sharing rather than decision-making sharing, and included an acceptable role for non-adherence as a mechanism to express control and act on treatment preferences. Current instruments may not accurately measure decision-making preferences of African-American patients with diabetes. Future research should develop instruments to effectively measure decision-making preferences within this population. Emphasizing information-sharing that validates patients' experiences may be particularly meaningful to African-Americans with diabetes.

Consumer Outcomes After Implementing CommonGround as an Approach to Shared Decision Making.

PubMed

Salyers, Michelle P; Fukui, Sadaaki; Bonfils, Kelsey A; Firmin, Ruth L; Luther, Lauren; Goscha, Rick; Rapp, Charles A; Holter, Mark C

2017-03-01

The authors examined consumer outcomes before and after implementing CommonGround, a computer-based shared decision-making program. Consumers with severe mental illness (N=167) were interviewed prior to implementation and 12 and 18 months later to assess changes in active treatment involvement, symptoms, and recovery-related attitudes. Providers also rated consumers on level of treatment involvement. Most consumers used CommonGround at least once (67%), but few used the program regularly. Mixed-effects regression analyses showed improvement in self-reported symptoms and recovery attitudes. Self-reported treatment involvement did not change; however, for a subset of consumers with the same providers over time (N=83), the providers rated consumers as more active in treatment. This study adds to the growing literature on tools to support shared decision making, showing the potential benefits of CommonGround for improving recovery outcomes. More work is needed to better engage consumers in CommonGround and to test the approach with more rigorous methods.

The Ethics of Ambiguity

PubMed Central

2016-01-01

Understanding and embracing uncertainty are critical for effective teacher–learner relationships as well as for shared decision-making in the physician–patient relationship. However, ambiguity has not been given serious consideration in either the undergraduate or graduate medical curricula or in the role it plays in patient-centered care. In this article, the author examines the ethics of ambiguity and argues for a pedagogy that includes education in the importance of, and tolerance of, ambiguity that is inherent in medical education and practice. Common threads running through the ethics of ambiguity are the virtue of respect, and the development of a culture of respect is required for the successful understanding and implementation of a pedagogy of ambiguity. PMID:28725771

Culture and Moral Distress: What's the Connection and Why Does It Matter?

PubMed

Berlinger, Nancy; Berlinger, Annalise

2017-06-01

Culture is learned behavior shared among members of a group and from generation to generation within that group. In health care work, references to "culture" may also function as code for ethical uncertainty or moral distress concerning patients, families, or populations. This paper analyzes how culture can be a factor in patient-care situations that produce moral distress. It discusses three common, problematic situations in which assumptions about culture may mask more complex problems concerning family dynamics, structural barriers to health care access, or implicit bias. We offer sets of practical recommendations to encourage learning, critical thinking, and professional reflection among students, clinicians, and clinical educators. © 2017 American Medical Association. All Rights Reserved.

Risk perception about medication sharing among patients: a focus group qualitative study on borrowing and lending of prescription analgesics.

PubMed

Markotic, Filipa; Vrdoljak, Davorka; Puljiz, Marijana; Puljak, Livia

2017-01-01

One form of self-medication is sharing of medications, defined as borrowing or lending medications in situations where the receiver of these drugs is not the individual to whom the medications were allocated. To explore experiences and opinions of patients about sharing prescription analgesics, reasons for sharing prescription analgesics, the way in which patients choose to share those medications, their awareness of risk regarding sharing prescription analgesics, and how they estimated the potential risk. This qualitative study was conducted by focus group discussions with 40 participants led by a moderator trained in focus group methodology using a semi-structured moderator guide. Adults aged ≥18 years who had received a prescription for an analgesic at least once in a lifetime were included. Six separate focus groups were conducted to discuss participants' perception of risks associated with sharing of prescription analgesics among patients. Additionally, participants filled out two questionnaires on demographic data, their own behavior regarding sharing analgesics, and their attitudes about risks associated with sharing prescription analgesics. In a questionnaire, 55% of the participants indicated that they personally shared prescription analgesics, while subsequently in the focus group discussions, 76% confessed to such behavior. Participants recognized certain risks related to sharing of prescription analgesics, mentioned a number of reasons for engaging in such behavior, and indicated certain positive aspects of such behavior. Forty-five percent of the participants indicated that sharing prescription analgesics is riskier than sharing nonprescription analgesics. There is a prevalent attitude among participants that sharing prescription analgesics is a positive behavior, where potential benefits outweigh risks.

Identifying design considerations for a shared decision aid for use at the point of outpatient clinical care: An ethnographic study at an inner city clinic.

PubMed

Hajizadeh, Negin; Perez Figueroa, Rafael E; Uhler, Lauren M; Chiou, Erin; Perchonok, Jennifer E; Montague, Enid

2013-03-06

Computerized decision aids could facilitate shared decision-making at the point of outpatient clinical care. The objective of this study was to investigate whether a computerized shared decision aid would be feasible to implement in an inner-city clinic by evaluating the current practices in shared decision-making, clinicians' use of computers, patient and clinicians' attitudes and beliefs toward computerized decision aids, and the influence of time on shared decision-making. Qualitative data analysis of observations and semi-structured interviews with patients and clinicians at an inner-city outpatient clinic. The findings provided an exploratory look at the prevalence of shared decision-making and attitudes about health information technology and decision aids. A prominent barrier to clinicians engaging in shared decision-making was a lack of perceived patient understanding of medical information. Some patients preferred their clinicians make recommendations for them rather than engage in formal shared decision-making. Health information technology was an integral part of the clinic visit and welcomed by most clinicians and patients. Some patients expressed the desire to engage with health information technology such as viewing their medical information on the computer screen with their clinicians. All participants were receptive to the idea of a decision aid integrated within the clinic visit although some clinicians were concerned about the accuracy of prognostic estimates for complex medical problems. We identified several important considerations for the design and implementation of a computerized decision aid including opportunities to: bridge clinician-patient communication about medical information while taking into account individual patients' decision-making preferences, complement expert clinician judgment with prognostic estimates, take advantage of patient waiting times, and make tasks involved during the clinic visit more efficient. These findings should be incorporated into the design and implementation of a computerized shared decision aid at an inner-city hospital.

Sharing Patient-Generated Data in Clinical Practices: An Interview Study.

PubMed

Zhu, Haining; Colgan, Joanna; Reddy, Madhu; Choe, Eun Kyoung

2016-01-01

Patients are tracking and generating an increasingly large volume of personal health data outside the clinic due to an explosion of wearable sensing and mobile health (mHealth) apps. The potential usefulness of these data is enormous as they can provide good measures of everyday behavior and lifestyle. However, how we can fully leverage patient-generated data (PGD) and integrate them in clinical practice is less clear. In this interview study, we aim to understand how patients and clinicians currently share patient-generated data in clinical care practice. From the study, we identified technical, social, and organizational challenges in sharing and fully leveraging patient-generated data in clinical practices. Our findings can provide researchers potential avenues for enablers and barriers in sharing patient-generated data in clinical settings.

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry.

PubMed

Viviani, Laura; Zolin, Anna; Mehta, Anil; Olesen, Hanne Vebert

2014-06-07

Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a shared electronic platform for data collection that automatically computes derived variables, and automatically performs basic data quality controls is a good data management practice, that also helps in reducing missing data. We found crucial for success the collaboration with existing national and international registries, cystic fibrosis organisations and patients' associations.

Perceptual grouping in the human brain: common processing of different cues.

PubMed

Seymour, Kiley; Karnath, Hans-Otto; Himmelbach, Marc

2008-12-03

The perception of global scenes and objects consisting of multiple constituents is based on the integration of local elements or features. Gestalt grouping cues, such as proximity or similarity, can aid this process. Using functional MRI we investigated whether grouping guided by different gestalt cues rely on distinct networks in the brain or share a common network. Our study revealed that gestalt grouping involved the inferior parietal cortex, middle temporal gyrus and prefrontal cortex irrespective of the specific cue used. These findings agree with observations in neurological patients, which suggest that inferior parietal regions may aid the integration of local features into a global gestalt. Damage to this region results in simultanagnosia, a deficit in perceiving multiple objects and global scenes.

National evidence on the use of shared decision making in prostate-specific antigen screening.

PubMed

Han, Paul K J; Kobrin, Sarah; Breen, Nancy; Joseph, Djenaba A; Li, Jun; Frosch, Dominick L; Klabunde, Carrie N

2013-01-01

Recent clinical practice guidelines on prostate cancer screening using the prostate-specific antigen (PSA) test (PSA screening) have recommended that clinicians practice shared decision making-a process involving clinician-patient discussion of the pros, cons, and uncertainties of screening. We undertook a study to determine the prevalence of shared decision making in both PSA screening and nonscreening, as well as patient characteristics associated with shared decision making. A nationally representative sample of 3,427 men aged 50 to 74 years participating in the 2010 National Health Interview Survey responded to questions on the extent of shared decision making (past physician-patient discussion of advantages, disadvantages, and scientific uncertainty associated with PSA screening), PSA screening intensity (tests in past 5 years), and sociodemographic and health-related characteristics. Nearly two-thirds (64.3%) of men reported no past physician-patient discussion of advantages, disadvantages, or scientific uncertainty (no shared decision making); 27.8% reported discussion of 1 to 2 elements only (partial shared decision making); 8.0% reported discussion of all 3 elements (full shared decision making). Nearly one-half (44.2%) reported no PSA screening, 27.8% reported low-intensity (less-than-annual) screening, and 25.1% reported high-intensity (nearly annual) screening. Absence of shared decision making was more prevalent in men who were not screened; 88% (95% CI, 86.2%-90.1%) of nonscreened men reported no shared decision making compared with 39% (95% CI, 35.0%-43.3%) of men undergoing high-intensity screening. Extent of shared decision making was associated with black race, Hispanic ethnicity, higher education, health insurance, and physician recommendation. Screening intensity was associated with older age, higher education, usual source of medical care, and physician recommendation, as well as with partial vs no or full shared decision making. Most US men report little shared decision making in PSA screening, and the lack of shared decision making is more prevalent in nonscreened than in screened men. Screening intensity is greatest with partial shared decision making, and different elements of shared decision making are associated with distinct patient characteristics. Shared decision making needs to be improved in decisions for and against PSA screening.

Providing the Tools for Information Sharing: Net-Centric Enterprise Services

DTIC Science & Technology

2007-07-01

The Department of Defense (DoD) is establishing a net-centric environment that increasingly leverages shared services and Service-Oriented...transformational program that delivers a set of shared services as part of the DoD’s common infrastructure to enable networked joint force capabilities, improved interoperability, and increased information sharing across mission area services.

An ethical framework for sharing patient data without consent.

PubMed

Navarro, Robert

2008-01-01

There is no consensus on how to share patient records privately. Data privacy concepts are surveyed and a framework is presented for the safe sharing of sensitive data. It is argued that tailoring the data sharing to the privacy breach risks of each project holds out the best compromise for keeping the trust of the public and providing for the best quality data where detailed patient consent is not possible. To improve the protection of data by reducing privacy breaches and thus enable appropriate patient data sharing without consent. Any harm arising from data sharing must come from the data being identified, either fully or partially. The first step is an agreement on an acceptable privacy breach risk. Next, proceed to measure that risk for the proposed data when held by a given recipient. Finally, select from a menu of mitigation strategies (people, process and technical) to achieve acceptable risk. The framework is tested against the current UK approach administered by the Patient Information Advisory Group. The hard problem of non-consented data sharing should be divided into the easier (though non-trivial) ones of data and recipient breach risk measurement. Directed research in these two areas will help move the data sharing problem into the 'solved' pile.

The potential for shared decision-making and decision aids in rehabilitation medicine.

PubMed

van Til, Janine A; Drossaert, Constance H C; Punter, R Annemiek; Ijzerman, Maarten J

2010-06-01

Shared decision-making and the use of decision aids are increasingly promoted in various healthcare settings. The extent of their current use and potential in rehabilitation medicine is unknown. The aim of the present study was to explore the barriers to and facilitators of shared decision-making and use of decision aids in daily practice, and to explore the perceptions of physical and rehabilitation medicine (PRM) physicians toward them. A cross-sectional survey of 408 PRM physicians was performed (response rate 31%). PRM physicians expressed the highest levels of comfort with shared decision-making as opposed to paternalistic and informed decision-making. The majority reported that shared decision-making constituted their usual approach. The most important barriers to shared decision-making were cases in which the patient received conflicting recommendations and when the patient had difficulty accepting the disease. Key facilitators were the patient's trust in the PRM physician and the patient being knowledgeable about the disease and about treatment options. PRM physicians' attitudes towards the use of decision aids to inform patients were moderately positive. Shared decision-making appears to have great potential in the rehabilitation setting. Increasing the use of decision aids may contribute to the further implementation of shared decision-making.

Fibromyalgia and psychiatric disorders.

PubMed

Fietta, Pierluigi; Fietta, Pieranna; Manganelli, Paolo

2007-08-01

Fibromyalgia (FM) is a common and polymorphic syndrome, characterized by long-lasting, widespread musculoskeletal pain, in the presence of 11 or more tender points located at specific anatomical sites. A heterogeneous series of disturbances, mainly involving autonomic, neuroendocrine and neuropsychic systems, is usually present. Even if subjective, the chronic psychophysical suffering state of FM adversely affects the patient's quality of life, performance and mood. Cognitive behavioural therapy and antidepressant drugs are useful in FM treatment, suggesting a close link between the syndrome and psychiatric, psychological and behavioural factors. Our aim was to evaluate the personality profiles of FM patients, as well as the aggregation and relationships between FM and psychiatric disorders (PD), reviewing the available evidences in current literature on this comorbidity. Personality variables associated with psychological vulnerability are frequent in FM patients. Personality disorders are rarely reported. Compared with controls, FM patients show a significantly higher prevalence of depressive and anxiety disorders, reported in 20-80% and 13-63.8% of cases, respectively. This high variability may depend on the psychosocial characteristics of patients, since most of the studies were performed on tertiary care consulting patients, however, even referring to the lower percentages, the occurrence of PD is significantly higher in FM subjects compared to the general population (7%). Moreover, elevated frequencies of PD have been detected in relatives of FM patients. The FM/PD aggregation suggests a common physiopathology, and alterations of neurotransmitter systems may constitute the shared underlying factor.

Anti-jamming communication for body area network using chaotic frequency hopping.

PubMed

Gopalakrishnan, Balamurugan; Bhagyaveni, Marcharla Anjaneyulu

2017-12-01

The healthcare industries research trends focus on patient reliable communication and security is a paramount requirement of healthcare applications. Jamming in wireless communication medium has become a major research issue due to the ease of blocking communication in wireless networks and throughput degradation. The most commonly used technique to overcome jamming is frequency hopping (FH). However, in traditional FH pre-sharing of key for channel selection and a high-throughput overhead is required. So to overcome this pre-sharing of key and to increase the security chaotic frequency hopping (CFH) has been proposed. The design of chaos-based hop selection is a new development that offers improved performance in transmission of information without pre-shared key and also increases the security. The authors analysed the performance of proposed CFH system under different reactive jamming durations. The percentage of error reduction by the reactive jamming for jamming duration 0.01 and 0.05 s for FH and CFH is 55.03 and 84.24%, respectively. The obtained result shows that CFH is more secure and difficult to jam by the reactive jammer.

Hematological profile and risk factors associated with pulmonary tuberculosis patients in Quetta, Pakistan.

PubMed Central

Shafee, Muhammad; Abbas, Ferhat; Ashraf, Muhammad; Alam Mengal, Mohammad; Kakar, Niamatullah; Ahmad, Zafar; Ali, Fawad

2014-01-01

Objectives: Tuberculosis (TB) is a chronic debilitating infectious disease affecting more than one third of the global population. This study was designed to investigate different peripheral blood parameters and risk factors in TB patients. Methods: A total of 600 (Male, 238 and Female, 362) aging 20-80 Years patients with clinical signs of prolonged cough, chest pain and fever, were evaluated for peripheral blood parameters using hematology analyzer. All the informations related to the disease were collected from the patients and recorded using predesigned questionnaire. Results: Erythrocytic Sedimentation Rate (ESR), Hemoglobin (Hb) and lymphocytes were markedly changed in both sexes. Hemoglobin was recorded lower than normal value in 55% and 53% of male and female population respectively. Total leukocyte count was also lower than normal values in 8% and 6% of male and female respectively. Similarly neutropenia was observed in 5% and 8% cases, while neutrophilia was recorded as 60% and 64% in male and female patients respectively. Lymphocytopenia was also observed in 59% and 43% patients in male and female respectively. Illiteracy, smoking habits, overcrowding and living in shared houses were the main associated risk factors contributing in the enhancement of the disease. Conclusion: The disease was present significantly more in females and was relatively higher in older patients. Different hematological parameters like Erythrocytic sedimentation Rate (ESR), platelets and leukocytes work as hallmark and help the clinicians in early diagnosis of the disease. Malnutrition, smoking tobacco, living in shared houses, illiteracy and poverty were the common risk factors contributing to the dissemination of the tuberculosis in the target area population. PMID:24639827

Online Social Engagement by Cancer Patients: A Clinic-Based Patient Survey

PubMed Central

Wallner, Lauren

2016-01-01

Background The Internet is commonly used as a source of health information, but little is known about the Internet practices specific to cancer patients. Objective To understand cancer patients’ use of the Internet as an informational resource and for social support. Methods The researchers conducted a survey of 1282 patients at a comprehensive cancer center to assess frequency of Internet access and online behaviors. Results Of the cancer patients surveyed, 1096 (85.49%) had Internet access; of those with Internet access, 953 (86.95%) reported going online at least weekly, and 747 (68.16%) reported daily online activity. Grouping Internet users by their level of online social engagement revealed that out of 1096 users, 331 (30.20%) had not sought out social connections online, 227 (20.71%) had read about experiences from other cancer patients, 410 (37.41%) had also written about their personal experiences, and 128 (11.68%) had participated in a formal online group for cancer patients. Increased online social engagement was associated with an increased perception that the Internet was useful for social support. Conclusions Internet use among cancer patients was common, and most patients reported that they found useful information about their cancer diagnosis online. Cancer patients who actively posted or shared content perceived more social support from the Internet than those who used the Internet solely as an informational resource or to read about other cancer patients’ experiences. Physicians have a great opportunity to direct users to quality health information on the Web. PMID:28410186

Safety of Rural Nursing Home-to-Emergency Department Transfers: Improving Communication and Patient Information Sharing Across Settings.

PubMed

Tupper, Judith B; Gray, Carolyn E; Pearson, Karen B; Coburn, Andrew F

2015-01-01

The "siloed" approach to healthcare delivery contributes to communication challenges and to potential patient harm when patients transfer between settings. This article reports on the evaluation of a demonstration in 10 rural communities to improve the safety of nursing facility (NF) transfers to hospital emergency departments by forming interprofessional teams of hospital, emergency medical service, and NF staff to develop and implement tools and protocols for standardizing critical interfacility communication pathways and information sharing. We worked with each of the 10 teams to document current communication processes and information sharing tools and to design, implement, and evaluate strategies/tools to increase effective communication and sharing of patient information across settings. A mixed methods approach was used to evaluate changes from baseline in documentation of patient information shared across settings during the transfer process. Study findings showed significant improvement in key areas across the three settings, including infection status and baseline mental functioning. Improvement strategies and performance varied across settings; however, accurate and consistent information sharing of advance directives and medication lists remains a challenge. Study results demonstrate that with neutral facilitation and technical support, collaborative interfacility teams can assess and effectively address communication and information sharing problems that threaten patient safety.

A preliminary evaluation of trust and shared decision making among intensive care patients' family members.

PubMed

Epstein, Elizabeth G; Wolfe, Katherine

2016-11-01

The purpose of this study was to preliminarily evaluate ICU family members' trust and shared decision making using modified versions of the Wake Forest Trust Survey and the Shared Decision Making-9 Survey. Using a descriptive approach, the perceptions of family members of ICU patients (n=69) of trust and shared decision making were measured using the Wake Forest Trust Survey and the 9-item Shared Decision Making (SDM-9) Questionnaire. Both surveys were modified slightly to apply to family members of ICU patients and to include perceptions of nurses as well as physicians. Overall, family members reported high levels of trust and inclusion in decision making. Family members who lived with the patient had higher levels of trust than those who did not. Family members who reported strong agreement among other family about treatment decisions had higher levels of trust and higher SDM-9 scores than those who reported less family agreement. The modified surveys may be useful in evaluating family members' trust and shared decision making in ICU settings. Future studies should include development of a comprehensive patient-centered care framework that focuses on its central goal of maintaining provider-patient/family partnerships as an avenue toward effective shared decision making. Copyright © 2016 Elsevier Inc. All rights reserved.

Early-onset obsessive-compulsive disorder and personality disorders in adulthood.

PubMed

Maina, Giuseppe; Albert, Umberto; Salvi, Virginio; Pessina, Enrico; Bogetto, Filippo

2008-03-15

Obsessive-compulsive disorder (OCD) often emerges in childhood or adolescence. The aim of the present study was to evaluate whether adult patients with prepuberal onset differ from subjects with later onset in terms of personality disorder comorbidity. The Structured Clinical Interview for DSM-IV Axis II Disorders was used to assess 148 patients with a principal diagnosis of OCD according to the Structured Clinical Interview for DSM-IV Axis I Disorders. The following two subgroups of subjects were selected according to the age at onset of symptomatology: patients with an early-onset (< or =10 years), and patients with a later onset (> or =17 years). Of the 148 patients screened for the present study, 33 (22.3%) had an early onset and 1369 (46.6%) had a later onset. With regard to personality disorders, early-onset patients showed more OC personality disorders (OCPD) than later onset patients. Our finding suggests that OCD in childhood increases the risk for developing OCPD in adulthood, or that early-onset OCD and OCPD share a common pathogenesis.

The cancer experience map: an approach to including the patient voice in supportive care solutions.

PubMed

Hall, Leslie Kelly; Kunz, Breanne F; Davis, Elizabeth V; Dawson, Rose I; Powers, Ryan S

2015-05-28

The perspective of the patient, also called the "patient voice", is an essential element in materials created for cancer supportive care. Identifying that voice, however, can be a challenge for researchers and developers. A multidisciplinary team at a health information company tasked with addressing this issue created a representational model they call the "cancer experience map". This map, designed as a tool for content developers, offers a window into the complex perspectives inside the cancer experience. Informed by actual patient quotes, the map shows common overall themes for cancer patients, concerns at key treatment points, strategies for patient engagement, and targeted behavioral goals. In this article, the team members share the process by which they created the map as well as its first use as a resource for cancer support videos. The article also addresses the broader policy implications of including the patient voice in supportive cancer content, particularly with regard to mHealth apps.

Transcriptional profiling of human femoral mesenchymal stem cells in osteoporosis and its association with adipogenesis.

PubMed

Choi, Yong Jun; Song, Insun; Jin, Yilan; Jin, Hyun-Seok; Ji, Hyung Min; Jeong, Seon-Yong; Won, Ye-Yeon; Chung, Yoon-Sok

2017-10-20

Genetic alterations are major contributing factors in the development of osteoporosis. Osteoblasts and adipocytes share a common origin, mesenchymal stem cells (MSCs), and their genetic determinants might be important in the relationship between osteoporosis and obesity. In the present study, we aimed to isolate differentially expressed genes (DEGs) in osteoporosis and normal controls using human MSCs, and elucidate the common pathways and genes related to osteoporosis and adipogenesis. Human MSCs were obtained from the bone marrow of femurs from postmenopausal women during orthopedic surgeries. RNA sequencing (RNA-seq) was carried out using next-generation sequencing (NGS) technology. DEGs were identified using RNA-seq data. Ingenuity pathway analysis (IPA) was used to elucidate the common pathway related to osteoporosis and adipogenesis. Candidate genes for the common pathway were validated with other independent osteoporosis and obese subjects using RT-PCR (reverse transcription-polymerase chain reaction) analysis. Fifty-three DEGs were identified between postmenopausal osteoporosis patients and normal bone mineral density (BMD) controls. Most of the genetic changes were related to the differentiation of cells. The nuclear receptor subfamily 4 group A (NR4A) family was identified as possible common genes related to osteogenesis and adipogenesis. The expression level of the mRNA of NR4A1 was significantly higher in osteoporosis patients than in controls (p=0.018). The expression level of the mRNA of NR4A2 was significantly higher in obese patients than in controls (p=0.041). Some genetic changes in MSCs are involved in the pathophysiology of osteoporosis. The NR4A family might comprise common genes related to osteoporosis and obesity. Copyright © 2017 Elsevier B.V. All rights reserved.

X-linked nephrogenic diabetes insipidus mutations in North America and the Hopewell hypothesis.

PubMed Central

Bichet, D G; Arthus, M F; Lonergan, M; Hendy, G N; Paradis, A J; Fujiwara, T M; Morgan, K; Gregory, M C; Rosenthal, W; Didwania, A

1993-01-01

In X-linked nephrogenic diabetes insipidus (NDI) the urine of male patients is not concentrated after the administration of the antidiuretic hormone arginine-vasopressin. This disease is due to mutations in the V2 receptor gene that maps to chromosome region Xq28. In 1969, Bode and Crawford suggested that most NDI patients in North America shared common ancestors of Ulster Scot immigrants who arrived in Halifax in 1761 on the ship Hopewell. A link between this family and a large Utah kindred was also suggested. DNA was obtained from 17 affected male patients from the "Hopewell" kindred and from four additional families from Nova Scotia and New Brunswick who shared the same Xq28 NDI haplotype. The Utah kindred and two families (Q2, Q3) from Quebec were also studied. The "Hopewell" mutation, W71X, is a single base substitution (G-->A) that changes codon 71 from TGG (tryptophan) to TGA (stop). The W71X mutation was found in affected members of the Hopewell and of the four satellite families. The W71X mutation is the cause of X-linked NDI for the largest number of related male patients living in North America. Other families (Utah, Q2 and Q3) that are historically and ethnically unrelated bear other mutations in the V2 receptor gene. Images PMID:8104196

The EHR-ARCHE project: satisfying clinical information needs in a Shared Electronic Health Record system based on IHE XDS and Archetypes.

PubMed

Duftschmid, Georg; Rinner, Christoph; Kohler, Michael; Huebner-Bloder, Gudrun; Saboor, Samrend; Ammenwerth, Elske

2013-12-01

While contributing to an improved continuity of care, Shared Electronic Health Record (EHR) systems may also lead to information overload of healthcare providers. Document-oriented architectures, such as the commonly employed IHE XDS profile, which only support information retrieval at the level of documents, are particularly susceptible for this problem. The objective of the EHR-ARCHE project was to develop a methodology and a prototype to efficiently satisfy healthcare providers' information needs when accessing a patient's Shared EHR during a treatment situation. We especially aimed to investigate whether this objective can be reached by integrating EHR Archetypes into an IHE XDS environment. Using methodical triangulation, we first analysed the information needs of healthcare providers, focusing on the treatment of diabetes patients as an exemplary application domain. We then designed ISO/EN 13606 Archetypes covering the identified information needs. To support a content-based search for fine-grained information items within EHR documents, we extended the IHE XDS environment with two additional actors. Finally, we conducted a formative and summative evaluation of our approach within a controlled study. We identified 446 frequently needed diabetes-specific information items, representing typical information needs of healthcare providers. We then created 128 Archetypes and 120 EHR documents for two fictive patients. All seven diabetes experts, who evaluated our approach, preferred the content-based search to a conventional XDS search. Success rates of finding relevant information was higher for the content-based search (100% versus 80%) and the latter was also more time-efficient (8-14min versus 20min or more). Our results show that for an efficient satisfaction of health care providers' information needs, a content-based search that rests upon the integration of Archetypes into an IHE XDS-based Shared EHR system is superior to a conventional metadata-based XDS search. Copyright © 2013 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.

The EHR-ARCHE project: Satisfying clinical information needs in a Shared Electronic Health Record System based on IHE XDS and Archetypes☆

PubMed Central

Duftschmid, Georg; Rinner, Christoph; Kohler, Michael; Huebner-Bloder, Gudrun; Saboor, Samrend; Ammenwerth, Elske

2013-01-01

Purpose While contributing to an improved continuity of care, Shared Electronic Health Record (EHR) systems may also lead to information overload of healthcare providers. Document-oriented architectures, such as the commonly employed IHE XDS profile, which only support information retrieval at the level of documents, are particularly susceptible for this problem. The objective of the EHR-ARCHE project was to develop a methodology and a prototype to efficiently satisfy healthcare providers’ information needs when accessing a patient's Shared EHR during a treatment situation. We especially aimed to investigate whether this objective can be reached by integrating EHR Archetypes into an IHE XDS environment. Methods Using methodical triangulation, we first analysed the information needs of healthcare providers, focusing on the treatment of diabetes patients as an exemplary application domain. We then designed ISO/EN 13606 Archetypes covering the identified information needs. To support a content-based search for fine-grained information items within EHR documents, we extended the IHE XDS environment with two additional actors. Finally, we conducted a formative and summative evaluation of our approach within a controlled study. Results We identified 446 frequently needed diabetes-specific information items, representing typical information needs of healthcare providers. We then created 128 Archetypes and 120 EHR documents for two fictive patients. All seven diabetes experts, who evaluated our approach, preferred the content-based search to a conventional XDS search. Success rates of finding relevant information was higher for the content-based search (100% versus 80%) and the latter was also more time-efficient (8–14 min versus 20 min or more). Conclusions Our results show that for an efficient satisfaction of health care providers’ information needs, a content-based search that rests upon the integration of Archetypes into an IHE XDS-based Shared EHR system is superior to a conventional metadata-based XDS search. PMID:23999002

Insulin-Like Growth Factor-1 Deficiency and Cirrhosis Establishment

PubMed Central

de la Garza, Rocio G.; Morales-Garza, Luis Alonso; Martin-Estal, Irene; Castilla-Cortazar, Inma

2017-01-01

Cirrhosis represents the final stage of chronic liver damage, which can be due to different factors such as alcohol, metabolic syndrome with liver steatosis, autoimmune diseases, drugs, toxins, and viral infection, among others. Nowadays, cirrhosis is an important health problem and it is an increasing cause of morbidity and mortality, being the 14th most common cause of death worldwide. The physiopathological pathways that lead to fibrosis and finally cirrhosis partly depend on the etiology. Nevertheless, some common features are shared in this complex mechanism. Recently, it has been demonstrated that cirrhosis is a dynamic process that can be altered in order to delay or revert fibrosis. In addition, when cirrhosis has been established, insulin-like growth factor-1 (IGF-1) deficiency or reduced availability is a common condition, independently of the etiology of chronic liver damage that leads to cirrhosis. IGF-1 deprivation seriously contributes to the progressive malnutrition of cirrhotic patient, increasing the vulnerability of the liver to establish an inflammatory and oxidative microenvironment with mitochondrial dysfunction. In this context, IGF-1 deficiency in cirrhotic patients can justify some of the common characteristics of these individuals. Several studies in animals and humans have been done in order to test the replacement of IGF-1 as a possible therapeutic option, with promising results. PMID:28270882

Association of myasthenia gravis and Behçet's disease: A case report.

PubMed

Kisabay, Aysin; Sari, Ummu Serpil; Boyaci, Recep; Batum, Melike; Yilmaz, Hikmet; Selcuki, Deniz

2016-01-01

Myasthenia gravis is a disease of neuromuscular junction due to auto-immune destruction of the acetylcholine receptors. Behçet's disease, on the other hand, is a multisystemic vascular-inflammatory disease. Both conditions are not common in the general population although their association has not been reported in the literature. We wanted to present our patient who developed clinical course of myasthenia gravis following discontinuation of medications due to complications of corticosteroid for Behçet's disease. It was observed that clinical findings of myasthenia gravis recovered following restarting steroid treatment and he did not experience attacks of both conditions. Although Myasthenia gravis and Behçet's disease are distinct entities clinically as well as in terms of pathogenesis, they share common physiopathological features and their treatment is based on their common features. Copyright © 2016 Polish Neurological Society. Published by Elsevier Urban & Partner Sp. z o.o. All rights reserved.

BigMouth: a multi-institutional dental data repository

PubMed Central

Walji, Muhammad F; Kalenderian, Elsbeth; Stark, Paul C; White, Joel M; Kookal, Krishna K; Phan, Dat; Tran, Duong; Bernstam, Elmer V; Ramoni, Rachel

2014-01-01

Few oral health databases are available for research and the advancement of evidence-based dentistry. In this work we developed a centralized data repository derived from electronic health records (EHRs) at four dental schools participating in the Consortium of Oral Health Research and Informatics. A multi-stakeholder committee developed a data governance framework that encouraged data sharing while allowing control of contributed data. We adopted the i2b2 data warehousing platform and mapped data from each institution to a common reference terminology. We realized that dental EHRs urgently need to adopt common terminologies. While all used the same treatment code set, only three of the four sites used a common diagnostic terminology, and there were wide discrepancies in how medical and dental histories were documented. BigMouth was successfully launched in August 2012 with data on 1.1 million patients, and made available to users at the contributing institutions. PMID:24993547

Lichen planus and other lichenoid dermatoses: Kids are not just little people.

PubMed

Payette, Michael J; Weston, Gillian; Humphrey, Stephen; Yu, JiaDe; Holland, Kristen E

2015-01-01

Lichenoid dermatoses, a group of inflammatory skin conditions with characteristic clinical and histopathologic findings, range from common to rare. Classic lichen planus typically presents as pruritic, polygonal, violaceous flat-topped papules and plaques; many variants in morphology and location also exist. Other lichenoid dermatoses share similar clinical presentations and histopathologic findings. These include lichenoid drug eruption, lichen planus-like keratosis, lichen striatus, lichen nitidus, and keratosis lichenoides chronica. Epidemiologic characteristics vary among each lichenoid disorder. While classic lichen planus is considered a disease of adults, other lichenoid dermatoses may be more common in younger populations. The literature contains an array of reports on the variations in presentation and successful management of lichen planus and lichenoid dermatoses among diverse populations. Familiarity with the characteristics of each lichenoid dermatosis, rare or common within each patient population, is key to accomplishing timely recognition and effective management. Copyright © 2015 Elsevier Inc. All rights reserved.

Shared presence in physician-patient communication: A graphic representation.

PubMed

Ventres, William B; Frankel, Richard M

2015-09-01

Shared presence is a state of being in which physicians and patients enter into a deep sense of trust, respect, and knowing that facilitates healing. Communication between physicians and patients (and, in fact, all providers and recipients of health care) is the medium through which shared presence occurs, regardless of the presenting problem, time available, location of care, or clinical history of the patient. Conceptualizing how communication leads to shared presence has been a challenging task, however. Pathways of this process have been routinely lumped together as the biopsychosocial model or patient, person, and relationship-centered care--all deceptive in their simplicity but, in fact, highly complex--or reduced to descriptive explications of one constituent element (e.g., empathy). In this article, we reconcile these pathways and elements by presenting a graphic image for clinicians and teachers in medical education. This conceptual image serves as a framework to synthesize the vast literature on physician-patient communication. We place shared presence, the fundamental characteristic of effective clinical communication, at the center of our figure. Around this focal point, we locate four elemental factors that either contribute to or result from shared presence, including interpersonal skills, relational contexts, actions in clinical encounters, and healing outcomes. By visually presenting various known and emergent theories of physician-patient communication, outlining the flow of successful encounters between physicians and patients, and noting how such encounters can improve outcomes, physicians, other health care professionals, and medical educators can better grasp the complexity, richness, and potential for achieving shared presence with their patients. (c) 2015 APA, all rights reserved).

Physician Willingness and Resources to Serve More Medicaid Patients: Perspectives from Primary Care Physicians

PubMed Central

Sommers, Anna S.; Paradise, Julia; Miller, Carolyn

2011-01-01

Objective Sixteen million people will gain Medicaid under health reform. This study compares primary care physicians (PCPs) on reported acceptance of new Medicaid patients and practice characteristics. Data and Methods Sample of 1,460 PCPs in outpatient settings was drawn from a 2008 nationally representative survey of physicians. PCPs were classified into four categories based on distribution of practice revenue from Medicaid and Medicare and acceptance of new Medicaid patients. Fifteen in-depth telephone interviews supplemented analysis. Findings Most high- and moderate-share Medicaid PCPs report accepting “all” or “most” new Medicaid patients. High-share Medicaid PCPs were more likely than others to work in hospital-based practices (20%) and health centers (18%). About 30% of high- and moderate-share Medicaid PCPs worked in practices with a hospital ownership interest. Health IT use was similar between these two groups and high-share Medicare PCPs, but more high- and moderate-share Medicaid PCPs provided interpreters and non-physician staff for patient education. Over 40% of high- and moderate-share Medicaid PCPs reported inadequate patient time as a major problem. Low- and no-share Medicaid PCPs practiced in higher-income areas than high-share Medicaid PCPs. In interviews, difficulty arranging specialist care, reimbursement, and administrative hassles emerged as reasons for limiting Medicaid patients. Policy Implications PCPs already serving Medicaid are positioned to expand capacity but also face constraints. Targeted efforts to increase their capacity could help. Acceptance of new Medicaid patients under health reform will hinge on multiple factors, not payment alone. Trends toward hospital ownership could increase practices' capacity and willingness to serve Medicaid. PMID:22340772

Innovation in patient-centered care: lessons from a qualitative study of innovative health care organizations in Washington State

PubMed Central

2012-01-01

Background Growing interest in the promise of patient-centered care has led to numerous health care innovations, including the patient-centered medical home, shared decision-making, and payment reforms. How best to vet and adopt innovations is an open question. Washington State has been a leader in health care reform and is a rich laboratory for patient-centered innovations. We sought to understand the process of patient-centered care innovation undertaken by innovative health care organizations – from strategic planning to goal selection to implementation to maintenance. Methods We conducted key-informant interviews with executives at five health plans, five provider organizations, and ten primary care clinics in Washington State. At least two readers of each interview transcript identified themes inductively; final themes were determined by consensus. Results Innovation in patient-centered care was a strategic objective chosen by nearly every organization in this study. However, other goals were paramount: cost containment, quality improvement, and organization survival. Organizations commonly perceived effective chronic disease management and integrated health information technology as key elements for successful patient-centered care innovation. Inertia, resource deficits, fee-for-service payment, and regulatory limits on scope of practice were cited as barriers to innovation, while organization leadership, human capital, and adaptive culture facilitated innovation. Conclusions Patient-centered care innovations reflected organizational perspectives: health plans emphasized cost-effectiveness while providers emphasized health care delivery processes. Health plans and providers shared many objectives, yet the two rarely collaborated to achieve them. The process of innovation is heavily dependent on organizational culture and leadership. Policymakers can improve the pace and quality of patient-centered innovation by setting targets and addressing conditions for innovation. PMID:23241305

Patient involvement in decision-making: a cross-sectional study in a Malaysian primary care clinic

PubMed Central

Ambigapathy, Ranjini; Ng, Chirk Jenn

2016-01-01

Objective Shared decision-making has been advocated as a useful model for patient management. In developing Asian countries such as Malaysia, there is a common belief that patients prefer a passive role in clinical consultation. As such, the objective of this study was to determine Malaysian patients’ role preference in decision-making and the associated factors. Design A cross-sectional study. Setting Study was conducted at an urban primary care clinic in Malaysia in 2012. Participants Patients aged >21 years were chosen using systematic random sampling. Methods Consenting patients answered a self-administered questionnaire, which included demographic data and their preferred and actual role before and after consultation. Doctors were asked to determine patients’ role preference. The Control Preference Scale was used to assess patients’ role preference. Primary outcome Prevalence of patients’ preferred role in decision-making. Secondary outcomes (1) Actual role played by the patient in decision-making. (2) Sociodemographic factors associated with patients’ preferred role in decision-making. (3) Doctors’ perception of patients’ involvement in decision-making. Results The response rate was 95.1% (470/494). Shared decision-making was preferred by 51.9% of patients, followed by passive (26.3%) and active (21.8%) roles in decision-making. Higher household income was significantly associated with autonomous role preference (p=0.018). Doctors’ perception did not concur with patients’ preferred role. Among patients whom doctors perceived to prefer a passive role, 73.5% preferred an autonomous role (p=0.900, κ=0.006). Conclusions The majority of patients attending the primary care clinic preferred and played an autonomous role in decision-making. Doctors underestimated patients’ preference to play an autonomous role. PMID:26729393

Innovation in patient-centered care: lessons from a qualitative study of innovative health care organizations in Washington State.

PubMed

Reed, Peter; Conrad, Douglas A; Hernandez, Susan E; Watts, Carolyn; Marcus-Smith, Miriam

2012-12-14

Growing interest in the promise of patient-centered care has led to numerous health care innovations, including the patient-centered medical home, shared decision-making, and payment reforms. How best to vet and adopt innovations is an open question. Washington State has been a leader in health care reform and is a rich laboratory for patient-centered innovations. We sought to understand the process of patient-centered care innovation undertaken by innovative health care organizations - from strategic planning to goal selection to implementation to maintenance. We conducted key-informant interviews with executives at five health plans, five provider organizations, and ten primary care clinics in Washington State. At least two readers of each interview transcript identified themes inductively; final themes were determined by consensus. Innovation in patient-centered care was a strategic objective chosen by nearly every organization in this study. However, other goals were paramount: cost containment, quality improvement, and organization survival. Organizations commonly perceived effective chronic disease management and integrated health information technology as key elements for successful patient-centered care innovation. Inertia, resource deficits, fee-for-service payment, and regulatory limits on scope of practice were cited as barriers to innovation, while organization leadership, human capital, and adaptive culture facilitated innovation. Patient-centered care innovations reflected organizational perspectives: health plans emphasized cost-effectiveness while providers emphasized health care delivery processes. Health plans and providers shared many objectives, yet the two rarely collaborated to achieve them. The process of innovation is heavily dependent on organizational culture and leadership. Policymakers can improve the pace and quality of patient-centered innovation by setting targets and addressing conditions for innovation.

Developing online continuing education content for enhancing caring among Taiwan nurses.

PubMed

Hsu, Tzu-Chuan; Turton, Michael A; Cheng, Su-Fen; Lee-Hsieh, Jane

2013-04-01

To promote the quality of nursing care, a hospital in Taiwan committed to implementing its SHARE framework for clinical practice. This study was conducted to develop caring content for the SHARE framework in the form of online continuing education videos. Five focus group interviews were conducted with 19 exemplary nurses. A constant comparative method was used to extract caring themes that were integrated into the five components of SHARE: S: Sense patient's needs; H: Help patient out; A: Acknowledge patient's feelings; R: Respect patient's dignity and privacy; E: Explain what is happening. Concrete caring behaviors consistent with SHARE were identified. Real-world scenarios were used to produce five videos demonstrating the components of SHARE for use in online caring education. This project offers a new strategy for strengthening caring behavior in nurse-patient interactions and may help to establish a model for caring in nursing continuing education in Taiwan. Copyright 2013, SLACK Incorporated.

Experiences and perspectives on the GIST patient journey

PubMed Central

Macdonald, Nancy; Shapiro, Ari; Bender, Christina; Paolantonio, Marc; Coombs, John

2012-01-01

Purpose The tyrosine kinase inhibitor (TKI) imatinib has improved outcomes for patients with unresectable or metastatic gastrointestinal stromal tumors (GIST), and for patients receiving adjuvant therapy following GIST resection. This qualitative study explored the experiences and emotions of patients through GIST diagnosis, treatment initiation, disease control, and in some patients, loss of response and therapy switch. Patients and methods Ethnographic investigations were conducted, including semi- structured qualitative interviews of patients with resected or metastatic/unresectable GIST and their caregivers, from Canada (n = 15); the United States (n = 10); and Brazil, France, Germany, Russia, and Spain (n = 5 each). Some interviewees also kept 7-day photo journals. Responses were qualitatively analyzed to identify gaps and unmet needs where communication about disease, treatments, and adherence could be effective. Results Patients shared common experiences during each stage of disease management (crisis, hope, adaptation, new normal, and uncertainty). Patients felt a sense of crisis during diagnosis, followed by hope upon TKI therapy initiation. Over time, they came to adapt to their new lives (new normal) with cancer. With each follow-up, patients confronted the uncertainty of becoming TKI resistant and the possible need to switch therapy. During uncertainty many patients sought new information regarding GIST. Cases of disease progression and drug switching caused patients to revert to crisis and restart their emotional journey. Patients with primary or unresectable/metastatic GIST shared similar journeys, especially regarding uncertainty, although differences in the scope and timing of phases were observed. Strategies patients used to remain adherent included obtaining family support, setting reminder mechanisms, taking medicine at routine times, and storing medicine in prominent places. Conclusions Physicians and support staff can manage patient expectations and encourage adherence to therapy, which may facilitate optimal patient outcomes. Patient education about current GIST developments and adherence across all phases of the patient journey are of benefit. PMID:22536061

Dextromethorphan Addiction Mediated Through the NMDA System: Common Pathways With Alcohol?

PubMed

Roy, A Kenison; Hsieh, Chenen; Crapanzano, Kathleen

2015-01-01

Dextromethorphan, an antitussive (cough suppressant) drug of the morphinan class with sedative and dissociative properties found in cough syrup and other over-the-counter products, is also a substance of abuse, seen primarily in young adults all over the world. A case of dextromethorphan use disorder is presented in a 45-year-old women. Her repeated attempts at abstinence were unsuccessful secondary to continued intense cravings. Treatment with topiramate resulted in complete resolution of her cravings. Topiramate was chosen empirically because of a common action with dextromethorphan in the NMDA system. Genetic testing was obtained and the patient was found to be a carrier of the GRIK1 rs2832407(C:C) allele. The (C:C) allele has been associated with an increased risk of alcohol use disorder and a treatment response of patients with heavy drinking to topiramate. This case provides an opportunity to discuss personalized medicine (treatment options aided by the use of genetic testing) and the possible shared genetic susceptibility for dependence in 2 substances of abuse.

Dementia with Lewy bodies

PubMed Central

McKeith, Ian

2004-01-01

Dementia with Lewy bodies (DLB) is the second most common cause of neurodegenerative dementia in older people, accounting for 10% to 15% of all cases, it occupies part of a spectrum that includes Parkinson's disease and primary autonomic failure. All these diseases share a neuritic pathology based upon abnormal aggregation of the synaptic protein α-synuciein. It is important to identify DLB patients accurately because they have specific symptoms, impairments, and functional disabilities thai differ from other common dementia syndromes such as Alzheimer's disease, vascular cognitive impairment, and frontotemporal dementia. Clinical diagnostic criteria for DLB have been validated against autopsy, but fail to detect a substantial minority of cases with atypical presentations that are often due to the presence of mixed pathology. DLB patients frequently have severe neuroleptic sensitivity reactions, which are associated with significantly increased morbidity and mortality. Cholinesterase inhibitor treatment is usually well tolerated and substantially improves cognitive and neuropsychiatrie symptoms. Although virtually unrecognized 20 years ago, DLB could within this decade become one of the most treatable neurodegenerative disorders of late life. PMID:22033743

Disease-related and drug-induced skin manifestations in inflammatory bowel disease.

PubMed

Hindryckx, Pieter; Novak, Gregor; Costanzo, Antonio; Danese, Silvio

2017-03-01

Skin manifestations are common in patients with inflammatory bowel diseases (IBD) and can be part of a concomitant illness with a shared genetic background, an extra-intestinal manifestation of the disease, or a drug side-effect. Areas covered: We provide a practical overview of the epidemiology, pathogenesis, diagnosis, therapeutic approach and prognosis of the most frequent disease-related and drug-induced cutaneous manifestations in IBD, illustrated by cases encountered in our clinical practice. Among the most frequently encountered IBD-related lesions are erythema nodosum, pyoderma gangrenosum and Sweet's syndrome. Common skin manifestations with a strong association to TNF antagonists are local injection site reactions, psoriasiform lesions, cutaneous infections, vasculitides and lupus-like syndromes. In addition, we discuss the relation of thiopurines and TNF antagonists with the risk of skin cancer. Expert commentary: We hope this review will help caretakers involved in the management of IBD patients to recognize the lesions and to manage them in close collaboration with a dedicated dermatologist.

Role of the HLA system in the association between multiple sclerosis and infectious mononucleosis.

PubMed

Ramagopalan, Sreeram V; Meier, Ute C; Conacher, Margaret; Ebers, George C; Giovannoni, Gavin; Crawford, Dorothy H; McAulay, Karen A

2011-04-01

To determine whether multiple sclerosis (MS) and infectious mononucleosis (IM) share common HLA associations. A prospective cohort study was conducted from October 1, 1999, through September 30, 2003. University of Edinburgh Richard Verney Health Centre, Edinburgh, Scotland. Participants included 179 individuals who underwent asymptomatic Epstein-Barr virus seroconversion and 175 patients who developed IM. Genotyping for 5 classical HLA loci (HLA-A, HLA-B, HLA-C, HLA-DRB1, and HLA-DQB1). Diagnosis of IM and allele frequency. Allelic analysis showed that HLA-DRB1*01:01 was significantly associated with the development of IM (odds ratio, 3.2; P < .001). Patients with IM and HLA-DRB1*01:01 had a lower Epstein-Barr virus viral load compared with those without the allele (median, 783 vs 7366 copies/10(6) peripheral blood mononuclear cells; P = .03). HLA-DRB1*01:01 is protective against developing MS; thus, a common genetic basis between IM and MS is not supported.

Understanding the Osteosarcoma Pathobiology: A Comparative Oncology Approach

PubMed Central

Varshney, Jyotika; Scott, Milcah C.; Largaespada, David A.; Subramanian, Subbaya

2016-01-01

Osteosarcoma is an aggressive primary bone tumor in humans and is among the most common cancer afflicting dogs. Despite surgical advancements and intensification of chemo- and targeted therapies, the survival outcome for osteosarcoma patients is, as of yet, suboptimal. The presence of metastatic disease at diagnosis or its recurrence after initial therapy is a major factor for the poor outcomes. It is thought that most human and canine patients have at least microscopic metastatic lesions at diagnosis. Osteosarcoma in dogs occurs naturally with greater frequency and shares many biological and clinical similarities with osteosarcoma in humans. From a genetic perspective, osteosarcoma in both humans and dogs is characterized by complex karyotypes with highly variable structural and numerical chromosomal aberrations. Similar molecular abnormalities have been observed in human and canine osteosarcoma. For instance, loss of TP53 and RB regulated pathways are common. While there are several oncogenes that are commonly amplified in both humans and dogs, such as MYC and RAS, no commonly activated proto-oncogene has been identified that could form the basis for targeted therapies. It remains possible that recurrent aberrant gene expression changes due to gene amplification or epigenetic alterations could be uncovered and these could be used for developing new, targeted therapies. However, the remarkably high genomic complexity of osteosarcoma has precluded their definitive identification. Several advantageous murine models of osteosarcoma have been generated. These include spontaneous and genetically engineered mouse models, including a model based on forward genetics and transposon mutagenesis allowing new genes and genetic pathways to be implicated in osteosarcoma development. The proposition of this review is that careful comparative genomic studies between human, canine and mouse models of osteosarcoma may help identify commonly affected and targetable pathways for alternative therapies for osteosarcoma patients. Translational research may be found through a path that begins in mouse models, and then moves through canine patients, and then human patients. PMID:29056713

Molecular Definition of the 22q11 Deletions in Velo-Cardio-Facial Syndrome

PubMed Central

Morrow, Bernice; Goldberg, Rosalie; Carlson, Christine; Gupta, Ruchira Das; Sirotkin, Howard; Collins, John; Dunham, Ian; O'Donnell, Hilary; Scambler, Peter; Shprintzen, Robert; Kucherlapati, Raju

1995-01-01

Velo-cardio-facial syndrome (VCFS) is a common genetic disorder among individuals with cleft palate and is associated with hemizygous deletions in human chromosome 22q11. Toward the molecular definition of the deletions, we constructed a physical map of 22q11 in the form of overlapping YACs. The physical map covers >9 cM of genetic distance, estimated to span 5 Mb of DNA, and contains a total of 64 markers. Eleven highly polymorphic short tandem-repeat polymorphic (STRP) markers were placed on the physical map, and 10 of these were unambiguously ordered. The 11 polymorphic markers were used to type the DNA from a total of 61 VCFS patients and 49 unaffected relatives. Comparison of levels of heterozygosity of these markers in VCFS patients and their unaffected relatives revealed that four of these markers are commonly hemizygous among VCFS patients. To confirm these results and to define further the breakpoints in VCFS patients, 15 VCFS individuals and their unaffected parents were genotyped for the 11 STRP markers. Haplotypes generated from this study revealed that 82% of the patients have deletions that can be defined by the STRP markers. The results revealed that all patients who have a deletion share a common proximal breakpoint, while there are two distinct distal breakpoints. Markers D22S941 and D22S944 appear to be consistently hemizygous in patients with deletions. Both of these markers are located on a single nonchimeric YAC that is 400 kb long. The results also show that the parental origin of the deleted chromosome does not have any effect on the phenotypic manifestation ImagesFigure 2Figure 3 PMID:7762562

Molecular definition of the 22q11 deletions in velo-cardio-facial syndrome

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

Morrow, B.; Carlson, C.; Gupta, R.D.

Velo-cardio-facial syndrome (VCFS) is a common genetic disorder among individuals with cleft plate and is associated with hemizygous deletions in human chromosome 22q11. Toward the molecular definition of the deletions, we constructed a physical map of 22q11 in the form of overlapping YACs. The physical map covers >9 cM of genetic distance, estimated to span 5 Mb of DNA, and contains a total of 64 markers. Eleven highly polymorphic short tandem-repeat polymorphic (STRP) markers were placed on the physical map, and 10 of these were unambiguously ordered. The 11 polymorphic markers were used to type the DNA from a totalmore » of 61 VCFS patients and 49 unaffected relatives. Comparison of levels of heterozygosity of these markers in VCFS patients and their unaffected relatives revealed that four of these markers are commonly hemizygous among VCFS patients. To confirm these results and to define further the breakpoints in VCFS patients, 15 VCFS individuals and their unaffected parents were genotyped for the 11 STRP markers. Haplotypes generated from this study revealed that 82% of the patients have deletions that can be defined by the STRP markers. The results revealed that all patients who have a deletion share a common proximal breakpoint, while there are two distinct distal breakpoints. Markers D22S941 and D22S944 appear to be consistently hemizygous in patients with deletions. Both of these markers are located on a single nonchimeric YAC that is 400 kb long. The results show that the parental origin of the deleted chromosome does not have any effect on the phenotypic manifestation. 58 refs., 6 figs., 2 tabs.« less

The Evolution of the Shared Services Business Unit.

ERIC Educational Resources Information Center

Forst, Leland

2000-01-01

Explains shared services, where common business practices are applied by a staff unit focused entirely on delivering needed services at the highest value and lowest cost to internal customers. Highlights include accountability; examples of pioneering shared services organizations; customer focus transition; relationship management; expertise…

A Framework to Improve Surgeon Communication in High-Stakes Surgical Decisions: Best Case/Worst Case.

PubMed

Taylor, Lauren J; Nabozny, Michael J; Steffens, Nicole M; Tucholka, Jennifer L; Brasel, Karen J; Johnson, Sara K; Zelenski, Amy; Rathouz, Paul J; Zhao, Qianqian; Kwekkeboom, Kristine L; Campbell, Toby C; Schwarze, Margaret L

2017-06-01

Although many older adults prefer to avoid burdensome interventions with limited ability to preserve their functional status, aggressive treatments, including surgery, are common near the end of life. Shared decision making is critical to achieve value-concordant treatment decisions and minimize unwanted care. However, communication in the acute inpatient setting is challenging. To evaluate the proof of concept of an intervention to teach surgeons to use the Best Case/Worst Case framework as a strategy to change surgeon communication and promote shared decision making during high-stakes surgical decisions. Our prospective pre-post study was conducted from June 2014 to August 2015, and data were analyzed using a mixed methods approach. The data were drawn from decision-making conversations between 32 older inpatients with an acute nonemergent surgical problem, 30 family members, and 25 surgeons at 1 tertiary care hospital in Madison, Wisconsin. A 2-hour training session to teach each study-enrolled surgeon to use the Best Case/Worst Case communication framework. We scored conversation transcripts using OPTION 5, an observer measure of shared decision making, and used qualitative content analysis to characterize patterns in conversation structure, description of outcomes, and deliberation over treatment alternatives. The study participants were patients aged 68 to 95 years (n = 32), 44% of whom had 5 or more comorbid conditions; family members of patients (n = 30); and surgeons (n = 17). The median OPTION 5 score improved from 41 preintervention (interquartile range, 26-66) to 74 after Best Case/Worst Case training (interquartile range, 60-81). Before training, surgeons described the patient's problem in conjunction with an operative solution, directed deliberation over options, listed discrete procedural risks, and did not integrate preferences into a treatment recommendation. After training, surgeons using Best Case/Worst Case clearly presented a choice between treatments, described a range of postoperative trajectories including functional decline, and involved patients and families in deliberation. Using the Best Case/Worst Case framework changed surgeon communication by shifting the focus of decision-making conversations from an isolated surgical problem to a discussion about treatment alternatives and outcomes. This intervention can help surgeons structure challenging conversations to promote shared decision making in the acute setting.

Impact of type 2 diabetes medication cost sharing on patient outcomes and health plan costs.

PubMed

Thornton Snider, Julia; Seabury, Seth; Lopez, Janice; McKenzie, Scott; Goldman, Dana P

2016-06-01

To study the association between cost sharing for diabetes medications, adherence, hospitalization rates, and healthcare costs, with relationship to patient risk. A retrospective claims analysis of data from 35 large, private, self-insured employers (2004 to 2012). We examined outcomes for 92,410 patients aged 18 to 64 years with a type 2 diabetes (T2D) diagnosis who filled at least 1 T2D prescription. First, we examined the relationship between adherence, measured as the proportion of days covered, and cost sharing, measured as the out-of-pocket cost to purchase a pre-specified bundle of T2D prescriptions. We then examined the association between adherence and hospital days. Simulations showed the effect of increased cost sharing on adherence and inpatient utilization. A $10 increase in out-of-pocket cost was associated with a 1.9% reduction in adherence (P < .01). In turn, a 10% reduction in adherence was associated with a 15% increase in per-patient hospital days (0.17 days; P < .01). For the average plan, switching from low to high cost sharing reduced per-patient medication costs by $242 and increased per-patient hospitalization costs by $342, for a net increase of $100 in plan costs. Increases in per-patient costs were greater for high-risk patients, such as those with heart failure ($1328). Increased cost sharing for T2D medication was associated with reductions in pharmacy costs, but higher total costs for patients with T2D. This problem is particularly acute for patients with 1 or more cardiovascular comorbidities. The results suggest that increased diabetes cost sharing may hamper efforts to lower the total cost of diabetes care.

Social Media and Total Joint Arthroplasty: An Analysis of Patient Utilization on Instagram.

PubMed

Ramkumar, Prem N; Navarro, Sergio M; Haeberle, Heather S; Chughtai, Morad; Flynn, Megan E; Mont, Michael A

2017-09-01

The purpose of this study was to analyze the nature of shared content of total joint arthroplasty patients on Instagram. Specifically, we evaluated social media posts for: (1) perspective and timing; (2) tone; (3) focus (activities of daily living [ADLs], rehabilitation, return-to-work); and (4) the comparison between hip and knee arthroplasties. A search of the public Instagram domain was performed over a 6-month period. Total hip and knee arthroplasties (THA and TKA) were selected for the analysis using the following terms: "#totalhipreplacement," "#totalkneereplacement," and associated terms. 1287 individual public posts of human subjects were shared during the period. A categorical scoring system was utilized for media format (photo or video), time (preoperative, perioperative, or postoperative) period, tone (positive or negative), return-to-work, ADLs, rehabilitation, surgical site, radiograph image, satisfaction, and dissatisfaction. Ninety-one percent of the posts were shared during the postoperative period. Ninety-three percent of posts had a positive tone. Thirty-four percent of posts focused on both ADLs and 33.8% on rehabilitation. TKA patients shared more about their surgical site (14.5% vs 3.3%, P < .001) and rehabilitation (58.9% vs 8.8%, P < .001) than THA patients, whereas THA patients shared more about ADLs than TKA patients (60.5% vs 7.6%, P < .001). When sharing their experience on Instagram, arthroplasty patients did so with a positive tone, starting a week after surgery. TKA posts focused more on rehabilitation and wound healing than THA patients, whereas THA patients shared more posts on ADLs. The analysis of social media posts provides insight into what matters to patients after total joint arthroplasty. Copyright © 2017 Elsevier Inc. All rights reserved.

Website Sharing in Online Health Communities: A Descriptive Analysis.

PubMed

Nath, Chinmoy; Huh, Jina; Adupa, Abhishek Kalyan; Jonnalagadda, Siddhartha R

2016-01-13

An increasing number of people visit online health communities to seek health information. In these communities, people share experiences and information with others, often complemented with links to different websites. Understanding how people share websites can help us understand patients' needs in online health communities and improve how peer patients share health information online. Our goal was to understand (1) what kinds of websites are shared, (2) information quality of the shared websites, (3) who shares websites, (4) community differences in website-sharing behavior, and (5) the contexts in which patients share websites. We aimed to find practical applications and implications of website-sharing practices in online health communities. We used regular expressions to extract URLs from 10 WebMD online health communities. We then categorized the URLs based on their top-level domains. We counted the number of trust codes (eg, accredited agencies' formal evaluation and PubMed authors' institutions) for each website to assess information quality. We used descriptive statistics to determine website-sharing activities. To understand the context of the URL being discussed, we conducted a simple random selection of 5 threads that contained at least one post with URLs from each community. Gathering all other posts in these threads resulted in 387 posts for open coding analysis with the goal of understanding motivations and situations in which website sharing occurred. We extracted a total of 25,448 websites. The majority of the shared websites were .com (59.16%, 15,056/25,448) and WebMD internal (23.2%, 5905/25,448) websites; the least shared websites were social media websites (0.15%, 39/25,448). High-posting community members and moderators posted more websites with trust codes than low-posting community members did. The heart disease community had the highest percentage of websites containing trust codes compared to other communities. Members used websites to disseminate information, supportive evidence, resources for social support, and other ways to communicate. Online health communities can be used as important health care information resources for patients and caregivers. Our findings inform patients' health information-sharing activities. This information assists health care providers, informaticians, and online health information entrepreneurs and developers in helping patients and caregivers make informed choices.

Examining the etiological associations among higher-order temperament dimensions

PubMed Central

Allan, Nicholas P.; Mikolajewski, Amy J.; Lonigan, Christopher J.; Hart, Sara A.; Taylor, Jeanette

2014-01-01

A multivariate independent pathway model was used to examine the shared and unique genetic and environmental influences of Positive Affect (PA), Negative Affect (NA), and effortful control (EC) in a sample of 686 twin pairs (M age = 10.07, SD = 1.74). There were common genetic influences and nonshared environmental influences shared across all three temperament dimensions and shared environmental influences in common to NA and EC. There were also significant independent genetic influences unique to PA and NA and significant independent shared environmental influences unique to PA. This study demonstrates that there are genetic and environmental influences that affect the covariance among temperament dimensions as well as unique genetic and environmental influences that influence the dimensions independently. PMID:24729641

Molecular analysis of velo-cardio-facial syndrome patients with psychiatric disorders.

PubMed Central

Carlson, C; Papolos, D; Pandita, R K; Faedda, G L; Veit, S; Goldberg, R; Shprintzen, R; Kucherlapati, R; Morrow, B

1997-01-01

Velo-cardio-facial syndrome (VCFS) is characterized by conotruncal cardiac defects, cleft palate, learning disabilities, and characteristic facial appearance and is associated with hemizygous deletions within 22q11. A newly recognized clinical feature is the presence of psychiatric illness in children and adults with VCFS. To ascertain the relationship between psychiatric illness, VCFS, and chromosome 22 deletions, we evaluated 26 VCFS patients by clinical and molecular biological methods. The VCFS children and adolescents were found to share a set of psychiatric disorders, including bipolar spectrum disorders and attention-deficit disorder with hyperactivity. The adult patients, >18 years of age, were affected with bipolar spectrum disorders. Four of six adult patients had psychotic symptoms manifested as paranoid and grandiose delusions. Loss-of-heterozygosity analysis of all 26 patients revealed that all but 3 had a large 3-Mb common deletion. One patient had a nested distal deletion and two did not have a detectable deletion. Somatic cell hybrids were developed from the two patients who did not have a detectable deletion within 22q11 and were analyzed with a large number of sequence tagged sites. A deletion was not detected among the two patients at a resolution of 21 kb. There was no correlation between the phenotype and the presence of the deletion within 22q11. The remarkably high prevalence of bipolar spectrum disorders, in association with the congenital anomalies of VCFS and its occurrence among nondeleted VCFS patients, suggest a common genetic etiology. Images Figure 4 PMID:9106531

Attitudes Towards Data Collection, Ownership and Sharing Among Patients with Parkinson's Disease.

PubMed

Mursaleen, Leah Rose; Stamford, Jon Andrew; Jones, David Ashford; Windle, Richard; Isaacs, Tom

2017-01-01

The ownership and sharing of patient medical data is an increasingly contentious subject in medicine generally but also within the field of Parkinson's disease (PD). Despite being the providers of the medical data, patients are rarely consulted as to its usage. The objective of this paper is to establish patient attitudes to ownership of their own medical data and the sharing thereof. We report here the results of an online survey of people with Parkinson's. A total of 310 people took part in the 'sharing data' component of the survey, answering some or all of the questions for which they were eligible. Most respondents (208/306) were aged between 55 and 74 years. 55% of the sample were female and the mean number of years diagnosed was 7.1. Although 93% of respondents were willing to share data, only 41% were currently doing so and a further 8% did not know whether they were sharing any information in this way. There was a significant association between age and data sharing (p = 0.006). However, no clear relationship was found between data sharing and the number of years diagnosed, sex, medication class or health confidence. There was also no consensus among patients on ownership of, access to and usage of their research data. The lack of consensus on data ownership and general absence of clear demographic predictors of data sharing implies impaired communication pathways. We suggest that strategies directed towards improved communication may help to clarify data ownership and promote data sharing.

Sharing, Privacy and Trust in Our Networked World. A Report to the OCLC Membership

ERIC Educational Resources Information Center

Storey, Tom, Ed.

2007-01-01

The practice of using a social network to establish and enhance relationships based on some common ground--shared interests, related skills, or a common geographic location--is as old as human societies, but social networking has flourished due to the ease of connecting on the Web. This OCLC membership report explores this web of social…

78 FR 60348 - Self-Regulatory Organizations; Miami International Securities Exchange LLC; Notice of Filing and...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-10-01

... applicant must: (i) Be a Member in good standing of MIAX; (ii) qualify as an ``accredited investor'' as such... each unit (i) 101,695 shares of MIH common stock and (ii) warrants to purchase 2,182,639 shares of common stock of MIH in exchange for such participant Member's initial cash capital contribution of $508...

2006 Net Centric Operations Conference - Facilitating Net Centric Operations and Warfare

DTIC Science & Technology

2006-03-16

22, 2005 • White Paper, “Facilitating Shared Services in the DoD,” Feb 12, 2006 • White Paper, “ Shared Services : Performance Accountability and Risk...who demand a culture of information sharing and improved organizational effectiveness.” 12 Facilitating Shared Services : Task “What should be the...distinct programs.” 13 Facilitating Shared Services : Focus Areas • Governance and Control Policy • Common Information Standards and Technical

A case series study of hypopituitarism in older patients with and without gastrointestinal symptoms.

PubMed

Li, Xiaowei; Yang, Hang; Duan, Zhijun; Chang, Qingyong; Wei, Xiaoting; Li, Changjin; Ba, Ying; Du, Jianling

2018-06-04

Some older individuals who present with gastrointestinal symptoms as their chief complaint were ultimately diagnosed with hypopituitarism instead of gastrointestinal diseases. The aim of this study was to find the characteristics of biochemical indicators in these patients so as to reduce early misdiagnosis. We conducted a retrospective review of 45 patients with hypopituitarism who were at least 60 years of age. Two groups were included: group of hypopituitarism patients with gastrointestinal symptoms (Group G) included 23 patients with gastrointestinal symptoms and group of hypopituitarism patients without gastrointestinal symptoms (Group N) included 22 patients without these symptoms. In Group G, we investigated the prevalence of different gastrointestinal symptoms, the response of these symptoms to treatment, the occurrence of electrolyte disorders, and target gland dysfunction. Then, we compared the electrolyte and target gland function indices between the two groups. Nausea and vomiting were the most common complaints, accounting for 69.57% of the gastrointestinal symptoms in Group G. Hyponatremia was the most common electrolyte disorder, occurring in 72.86% (n = 18) of patients in Group G. Hypoadrenalism and hypothyroidism were reported by 69.57% and 60.78% of patients, respectively, in Group G. None of the gastrointestinal symptoms were relieved by 4 weeks of treatment with antacid and motility drugs. As mentioned, 18 patients also experienced refractory hyponatremia during early treatment including regular sodium supplements; however, their gastrointestinal symptoms and hyponatremia improved after only a week of treatment for hypopituitarism. Regarding the biochemical indicators, only serum sodium and cortisol in Group G were statistically lower compared with those in Group N (P < .05). Nausea and vomiting were the most common gastrointestinal symptoms in older patients with hypopituitarism, which were associated with lower serum sodium and cortisol. In addition, we hope to share the research to our gastroenterologists that serum sodium and cortisol should be tested when meeting elder patients with unexplained gastrointestinal symptoms.

To Share or Not to Share: A Cross-Sectional Study on Health Information Sharing and Its Determinants Among Chinese Rural Chronic Patients.

PubMed

Fu, Hang; Dong, Dong; Feng, Da; He, Zhifei; Tang, Shangfeng; Fu, Qian; Feng, Zhanchun

2017-10-01

To examine the determinants of the health information sharing among rural Chinese chronic patients. Two large population-based surveys in rural China were carried out from July 2011 to April 2012. Data used in this study were second hand and sorted out from the two previous databases. A binary logistic regression analysis was employed to discover the impact of demographic characteristics, level of health literacy, and other factors on respondents' health information sharing behavior. Among the total 1,324 participants, 63.6% share health information with others. Among all significant predictors, those who acquire health information via family and friends are 6.0 times the odds of sharing health information than those who do not. Participants who have more than six household members, with middle and high levels of health knowledge, and who are moderately involved in discussions or settlements of village affairs are also more likely to share health information. The reliance on interpersonal communication channels for health information, household size, the patients' preexisting health knowledge, and their activity in village affairs are crucial determinants for health information sharing among rural chronic patients. A more sophisticated model needs to be established to reveal the complex processes of health information communication.

Examining Thematic Similarity, Difference, and Membership in Three Online Mental Health Communities from Reddit: A Text Mining and Visualization Approach.

PubMed

Park, Albert; Conway, Mike; Chen, Annie T

2018-01-01

Social media, including online health communities, have become popular platforms for individuals to discuss health challenges and exchange social support with others. These platforms can provide support for individuals who are concerned about social stigma and discrimination associated with their illness. Although mental health conditions can share similar symptoms and even co-occur, the extent to which discussion topics in online mental health communities are similar, different, or overlapping is unknown. Discovering the topical similarities and differences could potentially inform the design of related mental health communities and patient education programs. This study employs text mining, qualitative analysis, and visualization techniques to compare discussion topics in publicly accessible online mental health communities for three conditions: Anxiety, Depression and Post-Traumatic Stress Disorder. First, online discussion content for the three conditions was collected from three Reddit communities (r/Anxiety, r/Depression, and r/PTSD). Second, content was pre-processed, and then clustered using the k -means algorithm to identify themes that were commonly discussed by members. Third, we qualitatively examined the common themes to better understand them, as well as their similarities and differences. Fourth, we employed multiple visualization techniques to form a deeper understanding of the relationships among the identified themes for the three mental health conditions. The three mental health communities shared four themes: sharing of positive emotion, gratitude for receiving emotional support, and sleep- and work-related issues. Depression clusters tended to focus on self-expressed contextual aspects of depression, whereas the Anxiety Disorders and Post-Traumatic Stress Disorder clusters addressed more treatment- and medication-related issues. Visualizations showed that discussion topics from the Anxiety Disorders and Post-Traumatic Stress Disorder subreddits shared more similarities to one another than to the depression subreddit. We observed that the members of the three communities shared several overlapping concerns (i.e., sleep- and work-related problems) and discussion patterns (i.e., sharing of positive emotion and showing gratitude for receiving emotional support). We also highlighted that the discussions from the r/Anxiety and r/PTSD communities were more similar to one another than to discussions from the r/Depression community. The r/Anxiety and r/PTSD subreddit members are more likely to be individuals whose experiences with a condition are long-term, and who are interested in treatments and medications. The r/Depression subreddit members may be a comparatively diffuse group, many of whom are dealing with transient issues that cause depressed mood. The findings from this study could be used to inform the design of online mental health communities and patient education programs for these conditions. Moreover, we suggest that researchers employ multiple methods to fully understand the subtle differences when comparing similar discussions from online health communities.

[Hypothermia].

PubMed

García Iriarte, Antxon; Sáenz Mendía, Raquel; Marín Fernández, Blanca

2010-01-01

A deep understanding about the causes and situations which predispose a patient to hypothermia can prevent its progression and the emergence of complications which present life-threatening risks and can lead to irreversible organ deterioration. The distinct degrees of hypothermia require a diagnosis and a distinct therapeutic treatment which share common pillars based on: the need to employ general measures which counterarrest the deterioration of those organs caused by heat loss; and the use of internal or external reheating methods which vary due to the degree of hypothermia and the hemodynamic stability of the patient. In moderate or severe cases, a nurse's role, as one who collaborates in patient treatment, requires paying special attention to strict monitoring of vital constants, neurological, metabolic and cardio-respiratory signs, as well as collaborating in various therapeutic procedures. As a nursing diagnosis, hypothermia refers to those situations in which a nurse's professional competence capacitates he/she to carry out actions which resolve that prejudicial situation a patient faces.

A Poisson approach to the validation of failure time surrogate endpoints in individual patient data meta-analyses.

PubMed

Rotolo, Federico; Paoletti, Xavier; Burzykowski, Tomasz; Buyse, Marc; Michiels, Stefan

2017-01-01

Surrogate endpoints are often used in clinical trials instead of well-established hard endpoints for practical convenience. The meta-analytic approach relies on two measures of surrogacy: one at the individual level and one at the trial level. In the survival data setting, a two-step model based on copulas is commonly used. We present a new approach which employs a bivariate survival model with an individual random effect shared between the two endpoints and correlated treatment-by-trial interactions. We fit this model using auxiliary mixed Poisson models. We study via simulations the operating characteristics of this mixed Poisson approach as compared to the two-step copula approach. We illustrate the application of the methods on two individual patient data meta-analyses in gastric cancer, in the advanced setting (4069 patients from 20 randomized trials) and in the adjuvant setting (3288 patients from 14 randomized trials).

Could Values and Social Structures in Singapore Facilitate Attainment of Patient-Focused, Cultural, and Linguistic Competency Standards in a Patient-Centered Medical Home Pilot?

PubMed Central

Shih, Jenny A; Shiow, Sue-Anne Toh Ee; Wee, Hwee-Lin

2015-01-01

Primary care practices in the United States are transforming into patient-centered medical homes (PCMHs) at a rapid pace. Newer PCMH standards have emphasized culturally and linguistically appropriate services (CLAS), but at this time, only some states in the United States have proposed or passed cultural competency training for health care professionals. Other countries are moving to PCMH models. Singapore, a small, ethnically diverse island nation, has national values and social structures that emphasize cultural and linguistic cohesion. In this piece, we examine Singapore’s first PCMH pilot with a national academic center and primary care practice group. Features such as common shared values, self-reliance, racial and religious harmony, patient experience surveillance, and incorporation of CLAS standards in routine health care transactions may predict success for the PCMH in Singapore, with some implications for the United States. PMID:28725822

Molecular genetics of childhood, adolescent and young adult non-Hodgkin lymphoma.

PubMed

Miles, Rodney R; Shah, Rikin K; Frazer, J Kimble

2016-05-01

Molecular genetic abnormalities are ubiquitous in non-Hodgkin lymphoma (NHL), but genetic changes are not yet used to define specific lymphoma subtypes. Certain recurrent molecular genetic abnormalities in NHL underlie molecular pathogenesis and/or are associated with prognosis or represent potential therapeutic targets. Most molecular genetic studies of B- and T-NHL have been performed on adult patient samples, and the relevance of many of these findings for childhood, adolescent and young adult NHL remains to be demonstrated. In this review, we focus on NHL subtypes that are most common in young patients and emphasize features actually studied in younger NHL patients. This approach highlights what is known about NHL genetics in young patients but also points to gaps that remain, which will require cooperative efforts to collect and share biological specimens for genomic and genetic analyses in order to help predict outcomes and guide therapy in the future. © 2016 John Wiley & Sons Ltd.

Pharmacological treatment of spondyloarthritis: exploring the effectiveness of nonsteroidal anti-inflammatory drugs, traditional disease-modifying antirheumatic drugs and biological therapies

PubMed Central

Caso, Francesco; Costa, Luisa; Del Puente, Antonio; Di Minno, Matteo Nicola Dario; Lupoli, Gelsy; Scarpa, Raffaele; Peluso, Rosario

2015-01-01

Spondyloarthritis represents a heterogeneous group of articular inflammatory diseases that share common genetic, clinical and radiological features. The therapy target of spondyloarthritis relies mainly in improving patients’ quality of life, controlling articular inflammation, preventing the structural joints damage and preserving the functional abilities, autonomy and social participation of patients. Among these, traditional disease-modifying antirheumatic drugs have been demonstrated to be effective in the management of peripheral arthritis; moreover, in the last decade, biological therapies have improved the approach to spondyloarthritis. In patients with axial spondyloarthritis, tumor necrosis factor α inhibitors are currently the only effective therapy in patients for whom conventional therapy with nonsteroidal anti-inflammatory drugs has failed. The aim of this review is to summarize the current experience and evidence about the pharmacological approach in spondyloarthritis patients. PMID:26568809

Sarcopenia, Frailty, and Diabetes in Older Adults

PubMed Central

2016-01-01

Populations are aging and the prevalence of diabetes mellitus is increasing tremendously. The number of older people with diabetes is increasing unexpectedly. Aging and diabetes are both risk factors for functional disability. Thus, increasing numbers of frail or disabled older patients with diabetes will increase both direct and indirect health-related costs. Diabetes has been reported as an important risk factor of developing physical disability in older adults. Older people with diabetes have lower muscle mass and weaker muscle strength. In addition, muscle quality is poorer in diabetic patients. Sarcopenia and frailty have a common soil and may share a similar pathway for multiple pathologic processes in older people. Sarcopenia is thought to be an intermediate step in the development of frailty in patients with diabetes. Thus, early detection of sarcopenia and frailty in older adults with diabetes should be routine clinical practice to prevent frailty or to intervene earlier in frail patients. PMID:27098509

Variations in patient response to tiered physician networks.

PubMed

Sinaiko, Anna D

2016-06-01

Prior studies found that tiered provider networks channel patients to preferred providers in certain contexts. This paper evaluates whether the effects of tiered physician networks vary for different types of patients. Cross-sectional analysis of fiscal year 2009 to 2010 administrative enrollment and claims data on nonelderly beneficiaries in Massachusetts Group Insurance Commission health plans. Main outcome measures are physician market share among new patients and the percent of physician's patients who switch away. We utilized estimated fixed effects linear regression models that were stratified by patient characteristics. Physicians with the worst tier rankings had lower market share among new patients who are older and sicker, or male, representing losses in market share of 10% and 15%, respectively, than other tiered physicians. A poor tier ranking did not affect physician market share of new patients who are female or younger. There was no effect of a physician's tier ranking on the proportion of patients who switch to other doctors among any groups of patients. Loyalty to their own physicians is pervasive across groups of patients. Physicians with poor tier rankings lost market share among new patients who are older and sicker, and among new male patients. Together, these findings suggest that tiered network designs have the potential for the greatest impact on value in healthcare over time, as more patients seek new relationships with physicians.

The European Cystic Fibrosis Society Patient Registry: valuable lessons learned on how to sustain a disease registry

PubMed Central

2014-01-01

Background Disease registries have the invaluable potential to provide an insight into the natural history of the disease under investigation, to provide useful information (e.g. through health indicators) for planning health care services and to identify suitable groups of patients for clinical trials enrolment. However, the establishment and maintenance of disease registries is a burdensome initiative from economical and organisational points of view and experience sharing on registries management is important to avoid waste of resources. The aim of this paper is to discuss the problems embedded in the institution and management of an international disease registry to warn against common mistakes that can derail the best of intentions: we share the experience of the European Cystic Fibrosis Society Patient Registry, which collects data on almost 30,000 patients from 23 countries. Methods We discuss the major problems that researchers often encounter in the creation and management of disease registries: definition of the aims the registry has to reach, definition of the criteria for patients referral to the registry, definition of the information to record, set up of a data quality process, handling of missing data, maintenance of data confidentiality, regulation of data use and dissemination of research results. Results We give examples on how many crucial aspects were solved by the European Cystic Fibrosis Society Patient Registry regarding objectives, inclusion criteria and variables definition, data management, data quality controls, missing data handling, confidentiality maintenance, data use and results dissemination. Conclusions We suggest an extensive literature research and discussions in working groups with different stake holders, including patient representatives, on the objectives, inclusion criteria and the information to record. We propose to pilot the recording of few variables and test the applicability of their definition first. The use of a shared electronic platform for data collection that automatically computes derived variables, and automatically performs basic data quality controls is a good data management practice, that also helps in reducing missing data. We found crucial for success the collaboration with existing national and international registries, cystic fibrosis organisations and patients’ associations. PMID:24908055

Double Back Cut in Post-mastectomy Breast Skin (Fish-Shaped Skin Paddle) in Delayed Pedicled TRAM Flap Breast Reconstruction.

PubMed

Berezovsky, Alexander Bogdanov; Pagkalos, Vasileios A; Shoham, Yaron; Krieger, Yuval; Silberstein, Eldad

2015-08-01

Breast reconstruction has become standard of care for female patients with breast cancer. The transverse rectus abdominis musculo-cutaneous flap (TRAMf) is the most common method of immediate or delayed autologous breast reconstruction following mastectomy. We share our experience with modified, double back cut of post-mastectomy skin in delayed pedicled TRAMf breast reconstruction, resulting in fish-shaped skin paddle. This sort of back cut is a simple, reliable way to obtain a natural, esthetically pleasant breast mound with inconspicuous hidden scars.

Continuing Education Needs of Non-Specialty-Trained Army General Dentists

DTIC Science & Technology

1994-01-01

68.25 at the DENTAC level and the supervisor’s view should prevail 15 Q11 Perio - Endo Problems 67.72 at the Dental Corps level. ’Tooic shared in common...69.59 12 Q6 Management of Medically Compromised 73.944 10 Q66 Analgesics 69.18 Patients 11 Q79 Management of Maxillofacial Injuries 69.18 13 Q67...14 Q79 Management of Maxillofacial Injuries 67.76, topics (Management of Military Dental Clinics, Principles of 15 Q90 Motivating Co-Workers 67.54

Nursing at ground zero: experiences during and after September 11 World Trade Center attack.

PubMed

Dickerson, Suzanne Steffan; Jezewski, Mary Ann; Nelson-Tuttle, Christine; Shipkey, Nancy; Wilk, Nancy; Crandall, Blythe

2002-01-01

The purpose of this study is to discover shared perceptions, feelings, and common experiences of nurses after the September 11th World Trade Center terrorist attack through interpretive analysis of narrative stories of seventeen nurses. Six themes and one constitutive pattern describe the experiences: (a) Loss of a symbol and regaining new meaning, (b) Disaster without patients, (c) Coordinating with and without organizations, (d) Rediscovering the pride in nursing, (e) Traumatic Stress, and (f) Preparing for the future. The constitutive pattern is that nursing enables a humanitarian disaster response.

Long coats, short coats and no coats: chaplaincy presents to psychiatry at the University of Texas MD Anderson Cancer Center, a report.

PubMed

Stouter, David K; Wallace, AnneMarie; Duffy, James; Rashid, Anis; Valentine, Alan

2012-03-01

When Chaplaincy and Psychiatry examine their own methodologies, do they work to reduce age-old barriers, thereby involving each other to promote holistic patient care? Chaplaincy trains in self-awareness and pastoral care specializing in religion, spirituality, grief and loss; while Psychiatry trains in medicine, neurology, and the behavioral neurosciences. Relationships across disciplines with common interests are vital. Ongoing dialogue between these professions will enhance the shared goals of coping and healing in the communities they serve.

Plants as models for the study of human pathogenesis.

PubMed

Guttman, David S

2004-05-01

There are many common disease mechanisms used by bacterial pathogens of plants and humans. They use common means of attachment, secretion and genetic regulation. They share many virulence factors, such as extracellular polysaccharides and some type III secreted effectors. Plant and human innate immune systems also share many similarities. Many of these shared bacterial virulence mechanisms are homologous, but even more appear to have independently converged on a common function. This combination of homologous and analogous systems reveals conserved and critical steps in the disease process. Given these similarities, and the many experimental advantages of plant biology, including ease of replication, stringent genetic and reproductive control, and high throughput with low cost, it is proposed that plants would make excellent models for the study of human pathogenesis.

How Jordan and Saudi Arabia are avoiding a tragedy of the commons over shared groundwater

NASA Astrophysics Data System (ADS)

Müller, Marc F.; Müller-Itten, Michèle C.; Gorelick, Steven M.

2017-07-01

Transboundary aquifers are ubiquitous and strategically important to global food and water security. Yet these shared resources are being depleted at an alarming rate. Focusing on the Disi aquifer, a key nonrenewable source of groundwater shared by Jordan and Saudi Arabia, this study develops a two-stage game that evaluates optimal transboundary strategies of common-pool resource exploitation under various assumptions. The analysis relies on estimates of agricultural water use from satellite imagery, which were obtained using three independent remote sensing approaches. Drawdown response to pumping is simulated using a 2-D regional aquifer model. Jordan and Saudi Arabia developed a buffer-zone strategy with a prescribed minimum distance between each country's pumping centers. We show that by limiting the marginal impact of pumping decisions on the other country's pumping costs, this strategy will likely avoid an impeding tragedy of the commons for at least 60 years. Our analysis underscores the role played by distance between wells and disparities in groundwater exploitation costs on common-pool overdraft. In effect, if pumping centers are distant enough, a shared aquifer no longer behaves as a common-pool resource and a tragedy of the commons can be avoided. The 2015 Disi aquifer pumping agreement between Jordan and Saudi Arabia, which in practice relies on a joint technical commission to enforce exclusion zones, is the first agreement of this type between sovereign countries and has a promising potential to avoid conflicts or resolve potential transboundary groundwater disputes over comparable aquifer systems elsewhere.

How Patient Cost-Sharing Trends Affect Adherence and Outcomes

PubMed Central

Eaddy, Michael T.; Cook, Christopher L.; O’Day, Ken; Burch, Steven P.; Cantrell, C. Ron

2012-01-01

Objective We sought to assess the relationship between patient cost sharing; medication adherence; and clinical, utilization, and economic outcomes. Methodology: We conducted a literature review of articles and abstracts published from January 1974 to May 2008. Articles were identified using PubMed, Ovid, medline, Web of Science, and Google Scholar databases. The following terms were used in the search: adherence, compliance, copay, cost sharing, costs, noncompliance, outcomes, hospitalization, utilization, economics, income, and persistence. Results: We identified and included 160 articles in the review. Although the types of interventions, measures, and populations studied varied widely, we were able to identify relatively clear relationships between cost sharing, adherence, and outcomes. Of the articles that evaluated the relationship between changes in cost sharing and adherence, 85% showed that an increasing patient share of medication costs was significantly associated with a decrease in adherence. For articles that investigated the relationship between adherence and outcomes, the majority noted that increased adherence was associated with a statistically significant improvement in outcomes. Conclusion: Increasing patient cost sharing was associated with declines in medication adherence, which in turn was associated with poorer health outcomes. PMID:22346336

Managing care pathways combining SNOMED CT, archetypes and an electronic guideline system.

PubMed

Bernstein, Knut; Andersen, Ulrich

2008-01-01

Today electronic clinical guideline systems exist, but they are not well integrated with electronic health records. This paper thus proposes that the patient's "position" in the pathway during the patient journey should be made visible to all involved healthcare parties and the patient. This requires that the generic knowledge, which is represented in the guidelines, is combined with the patient specific information - and then made accessible for all relevant parties. In addition to the decision support provided by the guideline system documentation support can be provided by templates based on archetypes. This paper provides a proposal for how the guideline system and the EHR can be integrated by the use of archetypes and SNOMED CT. SNOMED CT provides the common reference terminology and the semantic links between the systems. The proposal also includes the use of a National Patient Index for storing data about the patient's position in the pathway and for sharing this information by all involved parties.

Mass gathering medicine for the First East Asian Football Championship and the 24th European/South American Cup in Japan.

PubMed

Morimura, Naoto; Takahashi, Kohei; Katsumi, Atsushi; Koido, Yuichi; Sugimoto, Katsuhiko; Fuse, Akira; Ohta, Shoichi; Yamamoto, Yasuhiro; Sakamoto, Tetsuya

2007-04-01

It is very important to collect and accumulate data of same-type events from the point of view of appropriate preparedness for mass gathering medicine. On the basis of the experience of the 2002 FIFA World Cup Korea/Japan, the Japanese Association of Disaster Medicine organized the emergency medical assistance team during large football events. The objective was to analyze all clinical presentations available to the on-site physicians during this event. The total number of patients was 51 (patient presentation rate: 0.25/1000 spectators). Trauma, abdominal pain and common cold were the main pathologies encountered. Eight patients were transported to hospital. Forty-one patients (80.4% of total) were treated within the medical station and were not transported to hospital. These dispositions were considered to lighten the burden imposed on activities of local emergency medical services. Sharing databases with local medical services and surveying the outcome of patients are needed to allow patient presentation provision.

Shared Decision Making in Common Chronic Conditions: Impact of a Resident Training Workshop.

PubMed

Simmons, Leigh; Leavitt, Lauren; Ray, Alaka; Fosburgh, Blair; Sepucha, Karen

2016-01-01

Physicians must be competent in several different kinds of communication skills in order to implement shared decision making; however, these skills are not part of routine medical student education, nor are they formally taught during residency training. We developed a 1- and 2-hour workshop curriculum for internal medicine residents to promote shared decision making in treatment decisions for four common chronic conditions: diabetes, depression, hypertension, and hyperlipidemia. The workshops included a written case exercise, a short didactic presentation on shared decision-making concepts and strategies for risk communication, and two role-playing exercises focused on decision making for depression and hyperlipidemia treatment. We delivered the workshop as a required component of the resident curriculum in ambulatory medicine. To evaluate the impact of the workshop, we used written course evaluations, tracked the use of the newly introduced Decision Worksheets, and asked preceptors to perform direct observation of treatment decision conversations. Residents were involved in the development of the workshop and helped identify key content, suggested framing for difficult topics, and confirmed the need for the skills workshop. One hundred thirty internal medicine and medicine-pediatrics residents attended 8 workshops over a 4-month period. In written cases completed before the workshop, the majority of residents indicated that they would discuss medications, but few mentioned other treatment options or documented patients' goals and preferences in a sample encounter note with a patient with new depression symptoms. Overall, most participants (89.7%) rated the workshop as excellent or very good, and 93.5% said that they would change their practice based on what they learned. Decision Worksheets addressing diabetes, depression, hyperlipidemia, and hypertension were available on a primary care-focused intranet site and were downloaded almost 1,200 times in the first 8 months following the workshops. Preceptors were able to observe only one consult during which one of the four topics was discussed. Internal medicine residents had considerable gaps in shared decision-making skills as measured in a baseline written exercise. Residents provided valuable contributions to the development of a Decision Worksheet to be used at the point of care. Participants rated the skills workshop highly, though interns rated the exercise more useful than PGY-2 and PGY-3 residents did. The Decision Worksheets were accessed often following the sessions; however, observing the Decision Worksheets in use in real time was a challenge in the resident-faculty clinic. Additional studies are warranted to examine whether the workshop was successful in increasing residents' ability to implement skills in practice.

Shared decision making: what do clinicians need to know and why should they bother?

PubMed

Hoffmann, Tammy C; Légaré, France; Simmons, Magenta B; McNamara, Kevin; McCaffery, Kirsten; Trevena, Lyndal J; Hudson, Ben; Glasziou, Paul P; Del Mar, Christopher B

2014-07-07

Shared decision making enables a clinician and patient to participate jointly in making a health decision, having discussed the options and their benefits and harms, and having considered the patient's values, preferences and circumstances. It is not a single step to be added into a consultation, but a process that can be used to guide decisions about screening, investigations and treatments. The benefits of shared decision making include enabling evidence and patients' preferences to be incorporated into a consultation; improving patient knowledge, risk perception accuracy and patient-clinician communication; and reducing decisional conflict, feeling uninformed and inappropriate use of tests and treatments. Various approaches can be used to guide clinicians through the process. We elaborate on five simple questions that can be used: What will happen if the patient waits and watches? What are the test or treatment options? What are the benefits and harms of each option? How do the benefits and harms weigh up for the patient? Does the patient have enough information to make a choice? Although shared decision making can occur without tools, various types of decision support tools now exist to facilitate it. Misconceptions about shared decision making are hampering its implementation. We address the barriers, as perceived by clinicians. Despite numerous international initiatives to advance shared decision making, very little has occurred in Australia. Consequently, we are lagging behind many other countries and should act urgently.

Developing a grounded theory for interprofessional collaboration acquisition using facilitator and actor perspectives in simulated wilderness medical emergencies.

PubMed

Smith, Heather A; Reade, Maurianne; Marr, Marion; Jeeves, Nicholas

2017-01-01

Interprofessional collaboration is a complex process that has the potential to transform patient care for the better in urban, rural and remote healthcare settings. Simulation has been found to improve participants' interprofessional competencies, but the mechanisms by which interprofessionalism is learned have yet to be understood. A rural wilderness medicine conference (WildER Med) in northern Ontario, Canada with simulated medical scenarios has been demonstrated to be effective in improving participants' collaboration without formal interprofessional education (IPE) curriculum. Interprofessionalism may be taught through rural and remote medical simulation, as done in WildER Med where participants' interprofessional competencies improved without any formal IPE curriculum. This learning may be attributed to the informal and hidden curriculum. Understanding the mechanism by which this rural educational experience contributed to participants' learning to collaborate requires insight into the events before, during and after the simulations. The authors drew upon feedback from facilitators and patient actors in one-on-one interviews to develop a grounded theory for how collaboration is taught and learned. Sharing emerged as the core concept of a grounded theory to explain how team members acquired interprofessional collaboration competencies. Sharing was enacted through the strategies of developing common goals, sharing leadership, and developing mutual respect and understanding. Further analysis of the data and literature suggests that the social wilderness environment was foundational in enabling sharing to occur. Medical simulations in other rural and remote settings may offer an environment conducive to collaboration and be effective in teaching collaboration. When designing interprofessional education, health educators should consider using emergency response teams or rural community health teams to optimize the informal and hidden curriculum contributing to interprofessional learning.

Brain-CODE: A Secure Neuroinformatics Platform for Management, Federation, Sharing and Analysis of Multi-Dimensional Neuroscience Data.

PubMed

Vaccarino, Anthony L; Dharsee, Moyez; Strother, Stephen; Aldridge, Don; Arnott, Stephen R; Behan, Brendan; Dafnas, Costas; Dong, Fan; Edgecombe, Kenneth; El-Badrawi, Rachad; El-Emam, Khaled; Gee, Tom; Evans, Susan G; Javadi, Mojib; Jeanson, Francis; Lefaivre, Shannon; Lutz, Kristen; MacPhee, F Chris; Mikkelsen, Jordan; Mikkelsen, Tom; Mirotchnick, Nicholas; Schmah, Tanya; Studzinski, Christa M; Stuss, Donald T; Theriault, Elizabeth; Evans, Kenneth R

2018-01-01

Historically, research databases have existed in isolation with no practical avenue for sharing or pooling medical data into high dimensional datasets that can be efficiently compared across databases. To address this challenge, the Ontario Brain Institute's "Brain-CODE" is a large-scale neuroinformatics platform designed to support the collection, storage, federation, sharing and analysis of different data types across several brain disorders, as a means to understand common underlying causes of brain dysfunction and develop novel approaches to treatment. By providing researchers access to aggregated datasets that they otherwise could not obtain independently, Brain-CODE incentivizes data sharing and collaboration and facilitates analyses both within and across disorders and across a wide array of data types, including clinical, neuroimaging and molecular. The Brain-CODE system architecture provides the technical capabilities to support (1) consolidated data management to securely capture, monitor and curate data, (2) privacy and security best-practices, and (3) interoperable and extensible systems that support harmonization, integration, and query across diverse data modalities and linkages to external data sources. Brain-CODE currently supports collaborative research networks focused on various brain conditions, including neurodevelopmental disorders, cerebral palsy, neurodegenerative diseases, epilepsy and mood disorders. These programs are generating large volumes of data that are integrated within Brain-CODE to support scientific inquiry and analytics across multiple brain disorders and modalities. By providing access to very large datasets on patients with different brain disorders and enabling linkages to provincial, national and international databases, Brain-CODE will help to generate new hypotheses about the biological bases of brain disorders, and ultimately promote new discoveries to improve patient care.

Brain-CODE: A Secure Neuroinformatics Platform for Management, Federation, Sharing and Analysis of Multi-Dimensional Neuroscience Data

PubMed Central

Vaccarino, Anthony L.; Dharsee, Moyez; Strother, Stephen; Aldridge, Don; Arnott, Stephen R.; Behan, Brendan; Dafnas, Costas; Dong, Fan; Edgecombe, Kenneth; El-Badrawi, Rachad; El-Emam, Khaled; Gee, Tom; Evans, Susan G.; Javadi, Mojib; Jeanson, Francis; Lefaivre, Shannon; Lutz, Kristen; MacPhee, F. Chris; Mikkelsen, Jordan; Mikkelsen, Tom; Mirotchnick, Nicholas; Schmah, Tanya; Studzinski, Christa M.; Stuss, Donald T.; Theriault, Elizabeth; Evans, Kenneth R.

2018-01-01

Historically, research databases have existed in isolation with no practical avenue for sharing or pooling medical data into high dimensional datasets that can be efficiently compared across databases. To address this challenge, the Ontario Brain Institute’s “Brain-CODE” is a large-scale neuroinformatics platform designed to support the collection, storage, federation, sharing and analysis of different data types across several brain disorders, as a means to understand common underlying causes of brain dysfunction and develop novel approaches to treatment. By providing researchers access to aggregated datasets that they otherwise could not obtain independently, Brain-CODE incentivizes data sharing and collaboration and facilitates analyses both within and across disorders and across a wide array of data types, including clinical, neuroimaging and molecular. The Brain-CODE system architecture provides the technical capabilities to support (1) consolidated data management to securely capture, monitor and curate data, (2) privacy and security best-practices, and (3) interoperable and extensible systems that support harmonization, integration, and query across diverse data modalities and linkages to external data sources. Brain-CODE currently supports collaborative research networks focused on various brain conditions, including neurodevelopmental disorders, cerebral palsy, neurodegenerative diseases, epilepsy and mood disorders. These programs are generating large volumes of data that are integrated within Brain-CODE to support scientific inquiry and analytics across multiple brain disorders and modalities. By providing access to very large datasets on patients with different brain disorders and enabling linkages to provincial, national and international databases, Brain-CODE will help to generate new hypotheses about the biological bases of brain disorders, and ultimately promote new discoveries to improve patient care. PMID:29875648

A qualitative analysis of information sharing for children with medical complexity within and across health care organizations.

PubMed

Quigley, Laura; Lacombe-Duncan, Ashley; Adams, Sherri; Hepburn, Charlotte Moore; Cohen, Eyal

2014-06-30

Children with medical complexity (CMC) are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and high health care use. Information exchange is critically important in high quality care of complex patients at high risk for poor care coordination. Written care plans for CMC are an excellent test case for how well information sharing is currently occurring. The purpose of this study was to identify the barriers to and facilitators of information sharing for CMC across providers, care settings, and families. A qualitative study design with data analysis informed by a grounded theory approach was utilized. Two independent coders conducted secondary analysis of interviews with parents of CMC and health care professionals involved in the care of CMC, collected from two studies of healthcare service delivery for this population. Additional interviews were conducted with privacy officers of associated organizations to supplement these data. Emerging themes related to barriers and facilitators to information sharing were identified by the two coders and the research team, and a theory of facilitators and barriers to information exchange evolved. Barriers to information sharing were related to one of three major themes; 1) the lack of an integrated, accessible, secure platform on which summative health care information is stored, 2) fragmentation of the current health system, and 3) the lack of consistent policies, standards, and organizational priorities across organizations for information sharing. Facilitators of information sharing were related to improving accessibility to a common document, expanding the use of technology, and improving upon a structured communication plan. Findings informed a model of how various barriers to information sharing interact to prevent optimal information sharing both within and across organizations and how the use of technology to improve communication and access to information can act as a solution.

To share or not to share? Expected pros and cons of data sharing in radiological research.

PubMed

Sardanelli, Francesco; Alì, Marco; Hunink, Myriam G; Houssami, Nehmat; Sconfienza, Luca M; Di Leo, Giovanni

2018-06-01

The aims of this paper are to illustrate the trend towards data sharing, i.e. the regulated availability of the original patient-level data obtained during a study, and to discuss the expected advantages (pros) and disadvantages (cons) of data sharing in radiological research. Expected pros include the potential for verification of original results with alternative or supplementary analyses (including estimation of reproducibility), advancement of knowledge by providing new results by testing new hypotheses (not explored by the original authors) on pre-existing databases, larger scale analyses based on individual-patient data, enhanced multidisciplinary cooperation, reduced publication of false studies, improved clinical practice, and reduced cost and time for clinical research. Expected cons are outlined as the risk that the original authors could not exploit the entire potential of the data they obtained, possible failures in patients' privacy protection, technical barriers such as the lack of standard formats, and possible data misinterpretation. Finally, open issues regarding data ownership, the role of individual patients, advocacy groups and funding institutions in decision making about sharing of data and images are discussed. • Regulated availability of patient-level data of published clinical studies (data-sharing) is expected. • Expected benefits include verification/advancement of knowledge, reduced cost/time of research, clinical improvement. • Potential drawbacks include faults in patients' identity protection and data misinterpretation.

Similarities and differences between infantile and early childhood onset vanishing white matter disease.

PubMed

Zhou, Ling; Zhang, Haihua; Chen, Na; Zhang, Zhongbin; Liu, Ming; Dai, Lifang; Wang, Jingmin; Jiang, Yuwu; Wu, Ye

2018-06-01

Vanishing white matter disease (VWM) is one of the most prevalent inherited leukoencephalopathies in childhood. Infantile VWM is more severe but less understood than the classic early childhood type. We performed a follow-up study on 14 infantile and 26 childhood patients to delineate the natural history and neuroimaging features of VWM. Infantile and childhood patients shared similarities in the incidence of epileptic seizure (35.7 vs. 38.5%) and episodic aggravation (92.9 vs. 84.6%). Developmental delay before disease onset was more common in infantile patients. Motor disability was earlier and more severe in infantile VWM. In survivors with disease durations of 1-3 years, the Gross Motor Function Classification System (GMFCS) was classified as IV-V in 66.7% of infantile and only 29.4% of childhood patients. Kaplan-Meier survival curve analysis indicated that the 5-year survival rates were 21.6 and 91.3% in infantile and childhood VWM, respectively. In terms of MRI, infantile patients showed more extensive involvement and earlier rarefaction, with more common involvement of subcortical white matter, internal capsule, brain stem and dentate nuclei of the cerebellum. Restricted diffusion was more diffuse or extensive in infantile patients. In addition, four novel mutations were identified. In conclusion, we identified some similarities and differences in the natural history and neuroimaging features between infantile and early childhood VWM.

Same description, different values. How service users and providers define patient and public involvement in health care.

PubMed

Rise, Marit By; Solbjør, Marit; Lara, Mariela C; Westerlund, Heidi; Grimstad, Hilde; Steinsbekk, Aslak

2013-09-01

Patient and public involvement in health care is important, but the existing definitions of the concept do not integrate the stakeholders' own perceptions. To investigate and compare service users' and service providers' own definitions of patient and public involvement and their implications. Qualitative study with mainly individual in-depth semi-structured interviews conducted between June 2007 and June 2009. Data were analysed using a grounded theory approach. A total of 20 patients, 13 public representatives and 44 health service providers/managers in both somatic and mental health care were interviewed. A common definition of patient and public involvement emerged: It is founded on mutual respect, carried out through dialogue aiming at achieving shared decision making. Nevertheless, users and providers assigned different values to the core aspects: Respect was imperative for service users and implied for providers, dialogue was a way to gain respect for service users and to achieve good outcome for providers, and both worried that the other party wanted to make sole decisions. Users and providers need to consider that although they have a common definition of involvement in health care, they assign different values to its aspects. Increasing and improving patient and public involvement therefore requires knowledge on and dialogue between the parties about these differences. © 2011 John Wiley & Sons Ltd.

Transient ischemic attack and minor stroke are the most common manifestations of acute cerebrovascular disease: a prospective, population-based study--the Aarhus TIA study.

PubMed

von Weitzel-Mudersbach, Paul; Andersen, Grethe; Hundborg, Heidi H; Johnsen, Søren P

2013-01-01

Severity of acute vascular illness may have changed in the last decades due to improvements in primary and secondary prevention. Population-based data on the severity of acute ischemic cerebrovascular disease are sparse. We aimed to examine incidence, characteristics and severity of acute ischemic cerebrovascular disease in a well-defined population. All patients admitted with transient ischemic attack (TIA) or acute ischemic stroke from March 1, 2007, to February 29, 2008, with residence in the Aarhus area, were included. Incidence rates and characteristics of TIA and ischemic stroke were compared. TIA accounted for 30%, TIA and minor stroke combined for 65% of all acute ischemic cerebrovascular events. Age-adjusted incidence rates of TIA and ischemic stroke were 72.2/100,000 and 129.5/100,000 person-years, respectively. TIA patients were younger than stroke patients (66.3 vs. 72.7 years; p < 0.001). Atrial fibrillation, previous myocardial infarction and previous stroke were significantly more frequent in stroke patients; no differences in other baseline characteristics were found. Minor events are the most common in ischemic cerebrovascular disease, and may constitute a larger proportion than previously reported. TIA and stroke patients share many characteristics; however, TIA patients are younger and have fewer manifestations of atherosclerotic diseases, indicating a high potential for secondary prevention. Copyright © 2012 S. Karger AG, Basel.

Concordant and Discordant EGFR Mutations in Patients with Multifocal Adenocarcinomas: Implications for EGFR Targeted Therapy

PubMed Central

Chuang, Jody C.; Shrager, Joseph B.; Wakelee, Heather A.; Neal, Joel W.

2016-01-01

Purpose Adenocarcinoma remains the most common subtype of lung cancer in the United States. Most patients present with tumors that are invasive and often metastatic, but some patients develop multiple precursor in-situ or minimally invasive adenocarcinoma tumors which can be synchronous and metachronous. These precursor lesions harbor the same spectrum of genetic mutations found in pure-invasive adenocarcinomas, such as EGFR, KRAS and p53 mutations. It is less clear, however, if separate lesions in patients who present with multifocal disease share common underlying genetic driver mutations. Methods Here we review the relevant literature on molecular driver alterations in adenocarcinoma precursor lesions. We then report four cases with multifocal EGFR mutant adenocarcinomas in whom we performed molecular testing on 2 separate lesions. Findings In two of these patients, the mutations are concordant, and in two cases the mutations are discordant. A review of the literature demonstrates increasing evidence that lesions with discordant mutations may confer a more favorable prognosis, since they are unlikely to represent metastases. Implications Our findings suggest that the emergence of the dominant EGFR driver alteration is often independent between lesions in patients with multifocal adenocarcinomas, and thus the same targeted therapy may not be effective for all lesions. However, genetic testing of multiple lesions can help distinguish separate primary tumors from metastatic disease. PMID:27368115

Visual extinction in relation to visuospatial neglect after right-hemispheric stroke: quantitative assessment and statistical lesion-symptom mapping.

PubMed

Vossel, S; Eschenbeck, P; Weiss, P H; Weidner, R; Saliger, J; Karbe, H; Fink, G R

2011-08-01

Visual neglect and extinction are two common neurological syndromes in patients with right-hemispheric brain damage. Whether and how these two syndromes are associated or share common neural substrates is still a matter of debate. To address these issues, the authors investigated 56 patients with right-hemispheric stroke with a novel diagnostic test to detect extinction and neglect. In this computerised task, subjects had to respond to target stimuli in uni- and bilateral stimulation conditions with detection probabilities being assessed. A cluster-analytical approach identified 18 patients with neglect and 13 patients with extinction. Statistical lesion-symptom mapping analyses with measures for extinction and neglect were performed. Extinction and neglect co-occurred in a subset of patients but were also observed independently from each other, thereby constituting a double dissociation. Lesions within the right inferior parietal cortex were significantly associated with the severity of visual extinction. Visuospatial neglect was related to damage of fronto-parietal brain regions, with parieto-occipital areas affecting line bisection and dorsal fronto-parietal areas affecting cancellation task performance, respectively. Quantifying lesion-induced symptoms with this novel paradigm shows that extinction and neglect are dissociable syndromes in patients with right-hemispheric stroke. Furthermore, extinction and neglect can be related to differential neural substrates, with extinction being related to focal brain damage within the right inferior parietal cortex.

Mutations in the von Hippel-Lindau (VHL) tumor suppressor gene and VHL-haplotype analysis in patients with presumable congenital erythrocytosis.

PubMed

Cario, Holger; Schwarz, Klaus; Jorch, Norbert; Kyank, Ulrike; Petrides, Petro E; Schneider, Dominik T; Uhle, Renate; Debatin, Klaus-Michael; Kohne, Elisabeth

2005-01-01

Congenital erythrocytoses or polycythemias are rare and heterogeneous. A homozygous mutation (C598T->Arg200Trp) in the von Hippel-Lindau (VHL) gene was originally identified as the cause of the endemic Chuvash polycythemia. Subsequently this and other mutations in the VHL gene were also detected in several patients of different ethnic origin. Haplotype analyses of the VHL gene suggested a common origin for the Chuvash-type mutation. Thirty-four patients with presumable congenital erythrocytosis due to an unknown underlying disorder were examined for VHL gene mutations and VHL region haplotypes. Four patients were homozygous and one patient heterozygous for the Chuvash-type mutation. One additional patient presented a previously not described heterozygous mutation G311->T VHL in exon 1. The haplotype analyses were in agreement with recently published data for three of the four patients with homozygous mutations as well as for the patient with a heterozygous Chuvash-type mutation. One patient of Turkish origin with homozygous Chuvash-type mutation had a haplotype not previously found in individuals with Chuvash-type mutation. These results confirm that mutations in the VHL gene are responsible for a substantial proportion of patients with congenital erythrocytoses. Erythrocytoses due to a C598->T mutation of the VHL gene are not geographically restricted. The majority of patients with Chuvash polycythemia share a common VHL gene haplotype. The different haplotype in one of the patients with Chuvash-type mutation indicates that this mutation was not spread only from a single founder but developed independently in other individuals.

A twin study of perfume-related respiratory symptoms.

PubMed

Elberling, J; Lerbaek, A; Kyvik, K O; Hjelmborg, J

2009-11-01

Respiratory symptoms from environmental perfume exposure are main complaints in patients with multiple chemical sensitivities and often coincide with asthma and or eczema. In this population-based twin study we estimate the heritability of respiratory symptoms related to perfume and if co-occurrences of the symptoms in asthma, atopic dermatitis, hand eczema or contact allergy are influenced by environmental or genetic factors common with these diseases. In total 4,128 twin individuals (82%) responded to a questionnaire. The heritability of respiratory symptoms related to perfume is 0.35, 95%CI 0.14-0.54. Significant associations (p<0.05) between perfume-related respiratory symptoms and asthma, atopic dermatitis, hand eczema or contact allergy are not attributable to shared genetic or shared environmental/familial factors, except possibly for atopic dermatitis where genetic pleiotropy with respiratory symptoms to perfume is suggested by an estimated genetic correlation of 0.39, 95%CI 0.09-0.72.

[Conditional pricing for innovative medicines in France: stop telling about risk-sharing!].

PubMed

Megerlin, F

2013-09-01

Across global borders and throughout the various sectors of health care, the search for viable methods to pay for value has intensified. Driven by soaring costs and constrained budgets, public and private payers are seeking innovative ways to incentivize providers and product manufacturers to focus on effective outcomes for patients according to key performance indexes. Conditional pricing and performance-based payment for innovative medicines could facilitate access to quasi-monopsonic french market, in a context of financial crisis, loss of reciprocal confidence, and growing aversion for therapeutic and economical uncertainty. However, we consider these new methods of payment should not be termed "risk-sharing agreements", a misleading term despite its common use today. They also should not impact the national list prices of medicines, that is a decisive tool for stabilizing international trade. Copyright © 2013 Elsevier Masson SAS. All rights reserved.

Interpreting angina: symptoms along a gender continuum.

PubMed

Kreatsoulas, Catherine; Crea-Arsenio, Mary; Shannon, Harry S; Velianou, James L; Giacomini, Mita

2016-01-01

'Typical' angina is often used to describe symptoms common among men, while 'atypical' angina is used to describe symptoms common among women, despite a higher prevalence of angina among women. This discrepancy is a source of controversy in cardiac care among women. To redefine angina by (1) qualitatively comparing angina symptoms and experiences in women and men and (2) to propose a more meaningful construct of angina that integrates a more gender-centred approach. Patients were recruited between July and December 2010 from a tertiary cardiac care centre and interviewed immediately prior to their first angiogram. Symptoms were explored through in-depth semi-structured interviews, transcribed verbatim and analysed concurrently using a modified grounded theory approach. Angiographically significant disease was assessed at ≥70% stenosis of a major epicardial vessel. Among 31 total patients, 13 men and 14 women had angiograpically significant CAD. Patients describe angina symptoms according to 6 symptomatic subthemes that array along a 'gender continuum'. Gender-specific symptoms are anchored at each end of the continuum. At the centre of the continuum, are a remarkably large number of symptoms commonly expressed by both men and women. The 'gender continuum' offers new insights into angina experiences of angiography candidates. Notably, there is more overlap of shared experiences between men and women than conventionally thought. The gender continuum can help researchers and clinicians contextualise patient symptom reports, avoiding the conventional 'typical' versus 'atypical' distinction that can misrepresent gendered angina experiences.

Therapeutic advances for the tumors associated with neurofibromatosis type 1, type 2, and schwannomatosis.

PubMed

Blakeley, Jaishri O; Plotkin, Scott R

2016-05-01

Neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis (SWN) are tumor-suppressor syndromes. Each syndrome is an orphan disease; however, the tumors that arise within them represent the most common tumors of the nervous system worldwide. Systematic investigation of the pathways impacted by the loss of function of neurofibromin (encoded byNF1) and merlin (encoded byNF2) have led to therapeutic advances for patients with NF1 and NF2. In the syndrome of SWN, the genetic landscape is more complex, with 2 known causative genes (SMARCB1andLZTR1) accounting for up to 50% of familial SWN patients. The understanding of the molecular underpinnings of these syndromes is developing rapidly and offers more therapeutic options for the patients. In addition, common sporadic cancers harbor somatic alterations inNF1(ie, glioblastoma, breast cancer, melanoma),NF2(ie, meningioma, mesothelioma) andSMARCB1(ie, atypical teratoid/rhabdoid tumors) such that advances in management of syndromic tumors may benefit patients both with and without germline mutations. In this review, we discuss the clinical and genetic features of NF1, NF2 and SWN, the therapeutic advances for the tumors that arise within these syndromes and the interaction between these rare tumor syndromes and the common tumors that share these mutations. © The Author(s) 2016. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Interpreting angina: symptoms along a gender continuum

PubMed Central

Crea-Arsenio, Mary; Shannon, Harry S; Velianou, James L; Giacomini, Mita

2016-01-01

Background ‘Typical’ angina is often used to describe symptoms common among men, while ‘atypical’ angina is used to describe symptoms common among women, despite a higher prevalence of angina among women. This discrepancy is a source of controversy in cardiac care among women. Objectives To redefine angina by (1) qualitatively comparing angina symptoms and experiences in women and men and (2) to propose a more meaningful construct of angina that integrates a more gender-centred approach. Methods Patients were recruited between July and December 2010 from a tertiary cardiac care centre and interviewed immediately prior to their first angiogram. Symptoms were explored through in-depth semi-structured interviews, transcribed verbatim and analysed concurrently using a modified grounded theory approach. Angiographically significant disease was assessed at ≥70% stenosis of a major epicardial vessel. Results Among 31 total patients, 13 men and 14 women had angiograpically significant CAD. Patients describe angina symptoms according to 6 symptomatic subthemes that array along a ‘gender continuum’. Gender-specific symptoms are anchored at each end of the continuum. At the centre of the continuum, are a remarkably large number of symptoms commonly expressed by both men and women. Conclusions The ‘gender continuum’ offers new insights into angina experiences of angiography candidates. Notably, there is more overlap of shared experiences between men and women than conventionally thought. The gender continuum can help researchers and clinicians contextualise patient symptom reports, avoiding the conventional ‘typical’ versus ‘atypical’ distinction that can misrepresent gendered angina experiences. PMID:27158523

Central sensitization as the mechanism underlying pain in joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type.

PubMed

Di Stefano, G; Celletti, C; Baron, R; Castori, M; Di Franco, M; La Cesa, S; Leone, C; Pepe, A; Cruccu, G; Truini, A; Camerota, F

2016-09-01

Patients with joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type (JHS/EDS-HT) commonly suffer from pain. How this hereditary connective tissue disorder causes pain remains unclear although previous studies suggested it shares similar mechanisms with neuropathic pain and fibromyalgia. In this prospective study seeking information on the mechanisms underlying pain in patients with JHS/EDS-HT, we enrolled 27 consecutive patients with this connective tissue disorder. Patients underwent a detailed clinical examination, including the neuropathic pain questionnaire DN4 and the fibromyalgia rapid screening tool. As quantitative sensory testing methods, we included thermal-pain perceptive thresholds and the wind-up ratio and recorded a standard nerve conduction study to assess non-nociceptive fibres and laser-evoked potentials, assessing nociceptive fibres. Clinical examination and diagnostic tests disclosed no somatosensory nervous system damage. Conversely, most patients suffered from widespread pain, the fibromyalgia rapid screening tool elicited positive findings, and quantitative sensory testing showed lowered cold and heat pain thresholds and an increased wind-up ratio. While the lack of somatosensory nervous system damage is incompatible with neuropathic pain as the mechanism underlying pain in JHS/EDS-HT, the lowered cold and heat pain thresholds and increased wind-up ratio imply that pain in JHS/EDS-HT might arise through central sensitization. Hence, this connective tissue disorder and fibromyalgia share similar pain mechanisms. WHAT DOES THIS STUDY ADD?: In patients with JHS/EDS-HT, the persistent nociceptive input due to joint abnormalities probably triggers central sensitization in the dorsal horn neurons and causes widespread pain. © 2016 European Pain Federation - EFIC®

Molecular genetic analysis for periodic fever syndromes: a supplemental role for the diagnosis of adult-onset Still's disease.

PubMed

Li, Hongbin; Abramova, Irina; Chesoni, Sandra; Yao, Qingping

2018-06-17

Adult-onset Still's disease (AOSD) represents a systemic autoinflammatory disease (SAID), and its diagnostic criteria are clinical without genetic testing. Given shared manifestations between AOSD and hereditary SAIDs, molecular analysis may help differentiate these diseases. A PubMed literature search was conducted using key words "adult-onset Still's disease," "autoinflammatory disease," and "genetic mutation" between 1970 and February 2018. Articles on genetic mutations in the genes MEFV, TNFRSF1A, mevalonate kinase, or NOD2 for hereditary SAIDs in AOSD/systemic onset juvenile idiopathic arthritis (SJIA) patients were reviewed and analyzed. Five case series studies consisting of a total of 162 of both adult and pediatric patients were included. All patients fulfilled the Yamaguchi criteria for AOSD or the diagnostic criteria for SJIA. The results showed that 31.4% (51/162) of patients were identified to carry at least one genetic variant for periodic fever syndromes. In addition, four patients with the diagnosis of SJIA in other reports were confirmed to have FMF or TRAPS with molecular testing. These data together suggest that some patients who satisfy the clinical diagnostic criteria for AOSD/SOJIA could well be diagnosed with other SAIDs; genetic testing, particularly for those with atypical presentation can be supplementary to the accurate disease diagnosis by excluding other autoinflammatory diseases. AOSD is a diagnosis of exclusion and shares common manifestations with other SAIDs. The currently employed clinical criteria for AOSD can cause misdiagnosis. An updated set of classification criteria to integrate the molecular genetic analysis to exclude other autoinflammatory diseases is warranted.

Emergency physician perceptions of shared decision-making.

PubMed

Kanzaria, Hemal K; Brook, Robert H; Probst, Marc A; Harris, Dustin; Berry, Sandra H; Hoffman, Jerome R

2015-04-01

Despite the potential benefits of shared decision-making (SDM), its integration into emergency care is challenging. Emergency physician (EP) perceptions about the frequency with which they use SDM, its potential to reduce medically unnecessary diagnostic testing, and the barriers to employing SDM in the emergency department (ED) were investigated. As part of a larger project examining beliefs on overtesting, questions were posed to EPs about SDM. Qualitative analysis of two multispecialty focus groups was done exploring decision-making around resource use to generate survey items. The survey was then pilot-tested and revised to focus on advanced diagnostic imaging and SDM. The final survey was administered to EPs recruited at four emergency medicine (EM) conferences and 15 ED group meetings. This report addresses responses regarding SDM. A purposive sample of 478 EPs from 29 states were approached, of whom 435 (91%) completed the survey. EPs estimated that, on average, multiple reasonable management options exist in over 50% of their patients and reported employing SDM with 58% of such patients. Respondents perceived SDM as a promising solution to reduce overtesting. However, despite existing research to the contrary, respondents also commonly cited beliefs that 1) "many patients prefer that the physician decides," 2) "when offered a choice, many patients opt for more aggressive care than they need," and 3) "it is too complicated for patients to know how to choose." Most surveyed EPs believe SDM is a potential high-yield solution to overtesting, but many perceive patient-related barriers to its successful implementation. © 2015 by the Society for Academic Emergency Medicine.

Enhancing Shared Decision Making Through Carefully Designed Interventions That Target Patient And Provider Behavior.

PubMed

Tai-Seale, Ming; Elwyn, Glyn; Wilson, Caroline J; Stults, Cheryl; Dillon, Ellis C; Li, Martina; Chuang, Judith; Meehan, Amy; Frosch, Dominick L

2016-04-01

Patient-provider communication and shared decision making are essential for primary care delivery and are vital contributors to patient experience and health outcomes. To alleviate communication shortfalls, we designed a novel, multidimensional intervention aimed at nudging both patients and primary care providers to communicate more openly. The intervention was tested against an existing intervention, which focused mainly on changing patients' behaviors, in four primary care clinics involving 26 primary care providers and 300 patients. Study results suggest that compared to usual care, both the novel and existing interventions were associated with better patient reports of how well primary care providers engaged them in shared decision making. Future research should build on the work in this pilot to rigorously examine the comparative effectiveness and scalability of these interventions to improve shared decision making at the point of care. Project HOPE—The People-to-People Health Foundation, Inc.

National Evidence on the Use of Shared Decision Making in Prostate-Specific Antigen Screening

PubMed Central

Han, Paul K. J.; Kobrin, Sarah; Breen, Nancy; Joseph, Djenaba A.; Li, Jun; Frosch, Dominick L.; Klabunde, Carrie N.

2013-01-01

PURPOSE Recent clinical practice guidelines on prostate cancer screening using the prostate-specific antigen (PSA) test (PSA screening) have recommended that clinicians practice shared decision making—a process involving clinician-patient discussion of the pros, cons, and uncertainties of screening. We undertook a study to determine the prevalence of shared decision making in both PSA screening and nonscreening, as well as patient characteristics associated with shared decision making. METHODS A nationally representative sample of 3,427 men aged 50 to 74 years participating in the 2010 National Health Interview Survey responded to questions on the extent of shared decision making (past physician-patient discussion of advantages, disadvantages, and scientific uncertainty associated with PSA screening), PSA screening intensity (tests in past 5 years), and sociodemographic and health-related characteristics. RESULTS Nearly two-thirds (64.3%) of men reported no past physician-patient discussion of advantages, disadvantages, or scientific uncertainty (no shared decision making); 27.8% reported discussion of 1 to 2 elements only (partial shared decision making); 8.0% reported discussion of all 3 elements (full shared decision making). Nearly one-half (44.2%) reported no PSA screening, 27.8% reported low-intensity (less-than-annual) screening, and 25.1% reported high-intensity (nearly annual) screening. Absence of shared decision making was more prevalent in men who were not screened; 88% (95% CI, 86.2%–90.1%) of nonscreened men reported no shared decision making compared with 39% (95% CI, 35.0%–43.3%) of men undergoing high-intensity screening. Extent of shared decision making was associated with black race, Hispanic ethnicity, higher education, health insurance, and physician recommendation. Screening intensity was associated with older age, higher education, usual source of medical care, and physician recommendation, as well as with partial vs no or full shared decision making. CONCLUSIONS Most US men report little shared decision making in PSA screening, and the lack of shared decision making is more prevalent in nonscreened than in screened men. Screening intensity is greatest with partial shared decision making, and different elements of shared decision making are associated with distinct patient characteristics. Shared decision making needs to be improved in decisions for and against PSA screening. PMID:23835816

Trust, confidentiality, and the acceptability of sharing HIV-related patient data: lessons learned from a mixed methods study about Health Information Exchanges.

PubMed

Maiorana, Andre; Steward, Wayne T; Koester, Kimberly A; Pearson, Charles; Shade, Starley B; Chakravarty, Deepalika; Myers, Janet J

2012-04-19

Concerns about the confidentiality of personal health information have been identified as a potential obstacle to implementation of Health Information Exchanges (HIEs). Considering the stigma and confidentiality issues historically associated with human immunodeficiency virus (HIV) disease, we examine how trust-in technology, processes, and people-influenced the acceptability of data sharing among stakeholders prior to implementation of six HIEs intended to improve HIV care in parts of the United States. Our analyses identify the kinds of concerns expressed by stakeholders about electronic data sharing and focus on the factors that ultimately facilitated acceptability of the new exchanges. We conducted 549 surveys with patients and 66 semi-structured interviews with providers and other stakeholders prior to implementation of the HIEs to assess concerns about confidentiality in the electronic sharing of patient data. The patient quantitative data were analyzed using SAS 9.2 to yield sample descriptive statistics. The analysis of the qualitative interviews with providers and other stakeholders followed an open-coding process, and convergent and divergent perspectives emerging from those data were examined within and across the HIEs. We found widespread acceptability for electronic sharing of HIV-related patient data through HIEs. This acceptability appeared to be driven by growing comfort with information technologies, confidence in the security protocols utilized to protect data, trust in the providers and institutions who use the technologies, belief in the benefits to the patients, and awareness that electronic exchange represents an enhancement of data sharing already taking place by other means. HIE acceptability depended both on preexisting trust among patients, providers, and institutions and on building consensus and trust in the HIEs as part of preparation for implementation. The process of HIE development also resulted in forging shared vision among institutions. Patients and providers are willing to accept the electronic sharing of HIV patient data to improve care for a disease historically seen as highly stigmatized. Acceptability depends on the effort expended to understand and address potential concerns related to data sharing and confidentiality, and on the trust established among stakeholders in terms of the nature of the systems and how they will be used.

Communal Sharing and the Provision of Low-Volume High-Cost Health Services: Results of a Survey.

PubMed

Richardson, Jeff; Iezzi, Angelo; Chen, Gang; Maxwell, Aimee

2017-03-01

This paper suggests and tests a reason why the public might support the funding of services for rare diseases (SRDs) when the services are effective but not cost effective, i.e. when more health could be produced by allocating funds to other services. It is postulated that the fairness of funding a service is influenced by a comparison of the average patient benefit with the average cost to those who share the cost. Survey respondents were asked to allocate a budget between cost-effective services that had a small effect upon a large number of relatively well patients and SRDs that benefited a small number of severely ill patients but were not cost effective because of their high cost. Part of the budget was always allocated to the SRDs. The budget share rose with the number sharing the cost. Sharing per se appears to characterise preferences. This has been obscured in studies that focus upon cost per patient rather than cost per person sharing the cost.

Mycobacterium tuberculosis ecology in Venezuela: epidemiologic correlates of common spoligotypes and a large clonal cluster defined by MIRU-VNTR-24

PubMed Central

2009-01-01

Background Tuberculosis remains an endemic public health problem, but the ecology of the TB strains prevalent, and their transmission, can vary by country and by region. We sought to investigate the prevalence of Mycobacterium tuberculosis strains in different regions of Venezuela. A previous study identified the most prevalent strains in Venezuela but did not show geographical distribution nor identify clonal genotypes. To better understand local strain ecology, we used spoligotyping to analyze 1298 M. tuberculosis strains isolated in Venezuela from 1997 to 2006, predominantly from two large urban centers and two geographically distinct indigenous areas, and then studied a subgroup with MIRU-VNTR 24 loci. Results The distribution of spoligotype families is similar to that previously reported for Venezuela and other South American countries: LAM 53%, T 10%, Haarlem 5%, S 1.9%, X 1.2%, Beijing 0.4%, and EAI 0.2%. The six most common shared types (SIT's 17, 93, 605, 42, 53, 20) accounted for 49% of the isolates and were the most common in almost all regions, but only a minority were clustered by MIRU-VNTR 24. One exception was the third most frequent overall, SIT 605, which is the most common spoligotype in the state of Carabobo but infrequent in other regions. MIRU-VNTR homogeneity suggests it is a clonal group of strains and was named the "Carabobo" genotype. Epidemiologic comparisons showed that patients with SIT 17 were younger and more likely to have had specimens positive for Acid Fast Bacilli on microscopy, and patients with SIT 53 were older and more commonly smear negative. Female TB patients tended to be younger than male patients. Patients from the high incidence, indigenous population in Delta Amacuro state were younger and had a nearly equal male:female distribution. Conclusion Six SIT's cause nearly half of the cases of tuberculosis in Venezuela and dominate in nearly all regions. Strains with SIT 17, the most common pattern overall may be more actively transmitted and SIT 53 strains may be less virulent and associated with reactivation of past infections in older patients. In contrast to other common spoligotypes, strains with SIT 605 form a clonal group centered in the state of Carabobo. PMID:19660112

Job Sharing: Is It for You?

ERIC Educational Resources Information Center

Schumann, Linda

1994-01-01

A teacher of deaf children describes her experience with job sharing at both the intermediate grade and preschool levels. The important role played by the full-time teacher's aide in providing continuity as well as the importance of communication are emphasized. Guidelines and answers to common questions regarding job sharing are offered. (DB)

26 CFR 25.2512-6 - Valuation of certain life insurance and annuity contracts; valuation of shares in an open-end...

Code of Federal Regulations, 2011 CFR

2011-04-01

...) The fair market value of a share in an open-end investment company (commonly known as a “mutual fund... is a Saturday, Sunday, or holiday), the fair market value of the mutual fund share is the last public...

26 CFR 20.2031-8 - Valuation of certain life insurance and annuity contracts; valuation of shares in an open-end...

Code of Federal Regulations, 2011 CFR

2011-04-01

...) The fair market value of a share in an open-end investment company (commonly known as a “mutual fund..., or holiday), the fair market value of the mutual fund share is the last public redemption price...

26 CFR 1.356-2 - Receipt of additional consideration not in connection with an exchange.

Code of Federal Regulations, 2010 CFR

2010-04-01

... shares of the stock of Corporation Y plus $100 cash without requiring the surrender of any shares of its... stock of Corporation Y to A and 30 shares of such stock plus $100 cash to B without requiring the.... Individuals A and B each own 50 of the 100 outstanding shares of common stock of Corporation X. Corporation X...

The Great American Divide: The Military-Civilian Gap

DTIC Science & Technology

2012-03-14

for the common defense … do ordain and establish this Constitution for the United States of America .”1 Such are the words to... and “provide for the common defense ” that enshrine the idea of shared sacrifice among all the American people in protecting and defending the ...United States. For much of the United States’ history, this idea of shared sacrifice in the

Fair Share or Freeride: Burden Sharing in Post-Cold War NATO

DTIC Science & Technology

2015-05-23

military facilities in Europe. 56 Carl Elk, NATO Common Funds Burdensharing: Background and Current Issues (Washington DC: Congressional Research...Defense Minister Franz Joseph Jung replied, “our contribution is excellent.”114 Germany was clearly proud of its contribution to NATO operations, but...Monsanto, Portugal: NATO Joint Analysis Lessons Learned Centre (JALLC), 2011. Elk, Carl . NATO Common Funds Burdensharing: Background and Current

AMCP Partnership Forum: Managing Care in the Wave of Precision Medicine.

PubMed

2018-05-23

Precision medicine, the customization of health care to an individual's genetic profile while accounting for biomarkers and lifestyle, has increasingly been adopted by health care stakeholders to guide the development of treatment options, improve treatment decision making, provide more patient-centered care, and better inform coverage and reimbursement decisions. Despite these benefits, key challenges prevent its broader use and adoption. On December 7-8, 2017, the Academy of Managed Care Pharmacy convened a group of stakeholders to discuss these challenges and provide recommendations to facilitate broader adoption and use of precision medicine across health care settings. These stakeholders represented the pharmaceutical industry, clinicians, patient advocacy, private payers, device manufacturers, health analytics, information technology, academia, and government agencies. Throughout the 2-day forum, participants discussed evidence requirements for precision medicine, including consistent ways to measure the utility and validity of precision medicine tests and therapies, limitations of traditional clinical trial designs, and limitations of value assessment framework methods. They also highlighted the challenges with evidence collection and data silos in precision medicine. Interoperability within and across health systems is hindering clinical advancements. Current medical coding systems also cannot account for the heterogeneity of many diseases, preventing health systems from having a complete understanding of their patient population to inform resource allocation. Challenges faced by payers, such as evidence limitations, to inform coverage and reimbursement decisions in precision medicine, as well as legal and regulatory barriers that inhibit more widespread data sharing, were also identified. While a broad range of perspectives was shared throughout the forum, participants reached consensus across 2 overarching areas. First, there is a greater need for common definitions, thresholds, and standards to guide evidence generation in precision medicine. Second, current information silos are preventing the sharing of valuable data. Collaboration among stakeholders is needed to support better information sharing, awareness, and education of precision medicine for patients. The recommendations brought forward by this diverse group of experts provide a set of solutions to spur widespread use and application of precision medicine. Taken together, successful adoption and use of precision medicine will require input and collaboration from all sectors of health care, especially patients. DISCLOSURES This AMCP Partnership Forum and the development of the proceedings document were supported by Amgen, Foundation Medicine, Genentech, Gilead, MedImpact, National Pharmaceutical Council, Precision for Value, Sanofi, Takeda, and Xcenda.

Anaesthetic management of sleep-disordered breathing in adults.

PubMed

Hillman, David R; Chung, Frances

2017-02-01

Anaesthesia and sleep are different states of unconsciousness with considerable physiological common ground. Because of their shared depressant effects on muscle activation and ventilatory drive, patients with anatomically compromised airways will tend to obstruct in either state and those with impaired ventilatory capacity will tend to hypoventilate. Breathing behaviour in one state is predictive of that in the other. An essential difference is that while arousal responses are preserved during sleep, they are depressed during sedation and abolished by anaesthesia. This renders patients with sleep-related breathing disorders vulnerable to hypoventilation and asphyxia when deeply sedated. Addressing this vulnerability requires a systematic approach to identification of patients and circumstances that magnify this risk, and methods of managing it that seek to reconcile the need for safety with cost-effective use of resources. © 2016 Asian Pacific Society of Respirology.

Preferred and Perceived Participation of Younger and Older Patients in Decision Making About Treatment for Early Breast Cancer: A Prospective Study.

PubMed

Hamelinck, Victoria C; Bastiaannet, Esther; Pieterse, Arwen H; van de Velde, Cornelis J H; Liefers, Gerrit-Jan; Stiggelbout, Anne M

2018-04-01

Older patients are believed to prefer a more passive role in treatment decision making, but studies reporting this relation were conducted over a decade ago or were retrospective. We prospectively compared younger (40-64 years) versus older (≥ 65 years) breast cancer patients' preferences for decision-making roles and their perceived actual roles. A prospective multicenter study was conducted in Leiden, The Hague, and Tilburg over a 2-year period. Early-stage breast cancer patients were surveyed about their preferred and perceived decision-making roles (active, shared, or passive) concerning surgery type (breast-conserving vs. mastectomy) (n = 74), adjuvant chemotherapy (aCT, n = 43), and adjuvant hormonal therapy (aHT, n = 39). For all decisions, both age groups most frequently preferred a shared role before consultation, except for decisions about aHT, for which younger patients more commonly preferred an active role. The proportion of patients favoring an active or passive role in each decision was lower for the older than the younger patients, but none of the differences was significant. Regarding perceived actual roles, both groups most frequently reported an active role in the surgical decision after consultation. In deciding about both aCT and aHT, a larger proportion of older patients perceived having had a passive role compared to younger patients, and a greater proportion of younger patients perceived having been active. Again, differences were not statistically significant. Most older patients preferred to decide together with their clinician, but preferences varied widely. Older patients more often than younger patients perceived they had not been involved in decisions about systemic therapy. Clinicians should invite all patients to participate in decision making and elicit their preferred role. Copyright © 2017 The Authors. Published by Elsevier Inc. All rights reserved.

Epilepsy and headaches: Further evidence of a link.

PubMed

Çilliler, Asli Ece; Güven, Hayat; Çomoğlu, Selim Selçuk

2017-05-01

Epilepsy and primary headaches are two of the most common neurologic conditions that share some common clinical characteristics, and can affect individuals of all age groups around the world. In recent years, the underlying pathophysiologic mechanisms potentially common to both headaches and epileptic seizures have been the subject of scrutiny. The objective of this study was to determine the frequencies and types of headaches in patients with epilepsy, and evaluate any temporal relationship with epileptic seizures. Demographic data, epilepsy durations, seizure frequencies, seizure types and antiepileptic medications used were captured of 349 patients who were followed up at our epilepsy outpatient clinic. Patients who experienced headaches were grouped based on the type of headaches and on whether their headaches occurred in the preictal, postictal or interictal period. Three hundred forty-nine patients (190 females, 159 males) were enrolled in the study. The patients' average age was 30.9±13.1 years, and average epilepsy duration was 13.5±10.9 years. The types of epileptic seizures were partial in 19.8% of patients, generalized in 57.9%, and secondary generalized in 20.3% of patients. Some 43.6% of the patients did not experience headaches, and 26.9% had migraine and 17.2% tension-type headaches. Headaches could not be classified in 12.3% of patients. The headaches occurred preictally in 9.6%, postictally in 41.6% and interictally in 8.6% of patients. The ratio of headaches was lower in male patients compared with females, and females experienced migraine-type headaches more frequently compared with males (p=0.006). Migraine-type headaches were less frequent a mong patients who experienced less than one seizure per year, but more frequent (p=0.017) among those who experienced more than one seizure per month, but less than one seizure per week. Migraine-type headaches were significantly more frequent (p=0.015) among patients receiving polytherapy compared with patients receiving monotherapy. The results of this study suggest that headaches, particularly migraine-type headaches, were frequently experienced by patients with epilepsy, postictal headaches were more common, and the frequency of migraine attacks could be linked with seizure frequency and the type of treatment. Copyright © 2017 Elsevier Inc. All rights reserved.

A Framework to Support the Sharing and Reuse of Computable Phenotype Definitions Across Health Care Delivery and Clinical Research Applications.

PubMed

Richesson, Rachel L; Smerek, Michelle M; Blake Cameron, C

2016-01-01

The ability to reproducibly identify clinically equivalent patient populations is critical to the vision of learning health care systems that implement and evaluate evidence-based treatments. The use of common or semantically equivalent phenotype definitions across research and health care use cases will support this aim. Currently, there is no single consolidated repository for computable phenotype definitions, making it difficult to find all definitions that already exist, and also hindering the sharing of definitions between user groups. Drawing from our experience in an academic medical center that supports a number of multisite research projects and quality improvement studies, we articulate a framework that will support the sharing of phenotype definitions across research and health care use cases, and highlight gaps and areas that need attention and collaborative solutions. An infrastructure for re-using computable phenotype definitions and sharing experience across health care delivery and clinical research applications includes: access to a collection of existing phenotype definitions, information to evaluate their appropriateness for particular applications, a knowledge base of implementation guidance, supporting tools that are user-friendly and intuitive, and a willingness to use them. We encourage prospective researchers and health administrators to re-use existing EHR-based condition definitions where appropriate and share their results with others to support a national culture of learning health care. There are a number of federally funded resources to support these activities, and research sponsors should encourage their use.

A Framework to Support the Sharing and Reuse of Computable Phenotype Definitions Across Health Care Delivery and Clinical Research Applications

PubMed Central

Richesson, Rachel L.; Smerek, Michelle M.; Blake Cameron, C.

2016-01-01

Introduction: The ability to reproducibly identify clinically equivalent patient populations is critical to the vision of learning health care systems that implement and evaluate evidence-based treatments. The use of common or semantically equivalent phenotype definitions across research and health care use cases will support this aim. Currently, there is no single consolidated repository for computable phenotype definitions, making it difficult to find all definitions that already exist, and also hindering the sharing of definitions between user groups. Method: Drawing from our experience in an academic medical center that supports a number of multisite research projects and quality improvement studies, we articulate a framework that will support the sharing of phenotype definitions across research and health care use cases, and highlight gaps and areas that need attention and collaborative solutions. Framework: An infrastructure for re-using computable phenotype definitions and sharing experience across health care delivery and clinical research applications includes: access to a collection of existing phenotype definitions, information to evaluate their appropriateness for particular applications, a knowledge base of implementation guidance, supporting tools that are user-friendly and intuitive, and a willingness to use them. Next Steps: We encourage prospective researchers and health administrators to re-use existing EHR-based condition definitions where appropriate and share their results with others to support a national culture of learning health care. There are a number of federally funded resources to support these activities, and research sponsors should encourage their use. PMID:27563686

Informed shared decision-making supported by decision coaches for women with ductal carcinoma in situ: study protocol for a cluster randomized controlled trial.

PubMed

Berger-Höger, Birte; Liethmann, Katrin; Mühlhauser, Ingrid; Haastert, Burkhard; Steckelberg, Anke

2015-10-12

Women with breast cancer want to participate in treatment decision-making. Guidelines have confirmed the right of informed shared decision-making. However, previous research has shown that the implementation of informed shared decision-making is suboptimal for reasons of limited resources of physicians, power imbalances between patients and physicians and missing evidence-based patient information. We developed an informed shared decision-making program for women with primary ductal carcinoma in situ (DCIS). The program provides decision coaching for women by specialized nurses and aims at supporting involvement in decision-making and informed choices. In this trial, the informed shared decision-making program will be evaluated in breast care centers. A cluster randomized controlled trial will be conducted to compare the informed shared decision-making program with standard care. The program comprises an evidence-based patient decision aid and training of physicians (2 hours) and specialized breast care and oncology nurses (4 days) in informed shared decision-making. Sixteen certified breast care centers will be included, with 192 women with primary DCIS being recruited. Primary outcome is the extent of patients' involvement in shared decision-making as assessed by the MAPPIN-Odyad (Multifocal approach to the 'sharing' in shared decision-making: observer instrument dyad). Secondary endpoints include the sub-measures of the MAPPIN-inventory (MAPPIN-Onurse, MAPPIN-Ophysician, MAPPIN-Opatient, MAPPIN-Qnurse, MAPPIN-Qpatient and MAPPIN-Qphysician), informed choice, decisional conflict and the duration of encounters. It is expected that decision coaching and the provision of evidence-based patient decision aids will increase patients' involvement in decision-making with informed choices and reduce decisional conflicts and duration of physician encounters. Furthermore, an accompanying process evaluation will be conducted. To our knowledge, this is the first study investigating the implementation of decision coaches in German breast care centers. Current Controlled Trials ISRCTN46305518 , date of registration: 5 June 2015.

Maternal endothelial damage as a disorder shared by early preeclampsia, late preeclampsia and intrauterine growth restriction.

PubMed

Kwiatkowski, Sebastian; Dołegowska, Barbara; Kwiatkowska, Ewa; Rzepka, Rafał; Marczuk, Natalia; Loj, Beata; Torbè, Andrzej

2017-10-26

Preeclampsia (PE) and intrauterine growth restriction (IUGR) are separate disease entities that have frequently been reported as sharing the same pathogenesis. In both of them, angiogenesis disorders and generalized endothelial damage with an accompanying inflammation are the dominant symptoms. In this study, we attempted to prove that both these processes demonstrate the same profile in early PE, late PE and IUGR patients, while the only difference is in the degree of exacerbation of the lesions. In 167 patients divided into four groups, three of those with early PE, late PE and IUGR and one control group, fms-like tyrosine kinase-1 (sFlt-1), placental growth factor (PlGF), high sensitive c-reactive protein (hsCRP) and fibronectin were determined. The behavior of these parameters in each of the groups was studied, and correlations between them were sought for. Higher concentrations of sFlt-1, hsCRP and fibronectin and a lower concentration of PlGF were found in the study groups compared to the control group. Significant correlations were observed between the factors concerned. The higher values of disordered angiogenesis markers, endothelial damage markers and inflammatory markers both in the PE and the intrauterine growth restriction (IUGR) groups suggest the existence of shared disorders in the development of these pathologies. The correlations between disordered angiogenesis markers and endothelial damage markers argue in favor of a mutual relationship between these two processes in the development of pathologies evolving as secondary to placental ischemia. The results obtained confirm that the lesion profiles are the same in both PE and IUGR patients, which can be utilized in developing common diagnostic criteria.

Conceptualizing and Categorizing Race and Ethnicity in Health Services Research

PubMed Central

Ford, Marvella E; Kelly, P Adam

2005-01-01

Objectives Veterans Affairs (VA) patient populations are becoming increasingly diverse in race and ethnicity. The purpose of this paper is to (1) document the importance of using consistent standards of conceptualizing and categorizing race and ethnicity in health services research, (2) provide an overview of different methods currently used to assess race and ethnicity in health services research, and (3) suggest assessment methods that could be incorporated into health services research to ensure accurate assessment of disease prevalence and incidence, as well as accounts of appropriate health services use, in patients with different racial and ethnic backgrounds. Design A critical review of published literature was used. Principal Findings Race is a complex, multidimensional construct. For some individuals, institutionalized racism and internalized racism are intertwined in the effects of race on health outcomes and health services use. Ethnicity is most commonly used as a social–political construct and includes shared origin, shared language, and shared cultural traditions. Acculturation appears to affect the strength of the relationships among ethnicity, health outcomes, and health services use. Conclusions Improved and consistent methods of data collection need to be developed for use by VA researchers across the country. VA research sites with patients representing specific population groups could use a core set of demographic items in addition to expanded modules designed to assess the ethnic diversity within these population groups. Improved and consistent methods of data collection could result in the collection of higher-quality data, which could lead to the identification of race- and ethnic-specific health services needs. These investigations could in turn lead to the development of interventions designed to reduce or eliminate these disparities. PMID:16179001

How do patients from eastern and western Germany compare with regard to their preferences for shared decision making?

PubMed

Hamann, Johannes; Bieber, Christiane; Elwyn, Glyn; Wartner, Eva; Hörlein, Elisabeth; Kissling, Werner; Toegel, Christfried; Berth, Hendrik; Linde, Klaus; Schneider, Antonius

2012-08-01

Increasing emphasis is being placed on involving patients in decisions concerning their health. This shift towards more patient engagement by health professionals and towards more desire by patients for participation may be partly based on socio-political factors. To compare the preferences for shared decision making of patients from eastern and western Germany we analysed five patient samples (n = 2318) (general practice patients and schizophrenia patients from eastern and western Germany). Patients' role preferences for shared decisions were measured using the decision-making subscale of the Autonomy Preference Index. Patients resident in eastern Germany expressed lower preferences for shared decision making than patients in western Germany. This was true after controlling for socio-demographic variables and for patient group. The cultural imprint (e.g. western vs. former communist society) seems to have a significant influence on patients' expectations and behaviour in the medical encounter. Health services providers need to be aware that health attitudes within the same health system might vary for historical and cultural reasons. The engagement of patients in medical decisions might not be susceptible to a 'one size fits all' approach; doctors should instead aim to accommodate the individual patient's desire for autonomy.

The realities of risk, the nature of hope, and the role of science: A response to Cook and VandeCreek.

PubMed

Rudd, M David; Joiner, Thomas; Brown, Gregory K; Cukrowicz, Kelly; Jobes, David A; Silverman, Morton

2009-12-01

A response is offered to the critiques of both Cook and VandeCreek. Among the points emphasized are the simple realities of risk with suicidal patients, existing empirical research with informed consent in both clinical psychology and other health care areas, as well as the persistence of common myths in clinical practice with suicidal patients. Although empirical science provides a firm foundation to much of what is proposed, it is critical for practitioners to recognize and respond to the ethical demands for openness and transparency with high-risk clients in an effort to achieve shared responsibility in care. (PsycINFO Database Record (c) 2010 APA, all rights reserved).

The Ethics of Ambiguity: Rethinking the Role and Importance of Uncertainty in Medical Education and Practice.

PubMed

Domen, Ronald E

2016-01-01

Understanding and embracing uncertainty are critical for effective teacher-learner relationships as well as for shared decision-making in the physician-patient relationship. However, ambiguity has not been given serious consideration in either the undergraduate or graduate medical curricula or in the role it plays in patient-centered care. In this article, the author examines the ethics of ambiguity and argues for a pedagogy that includes education in the importance of, and tolerance of, ambiguity that is inherent in medical education and practice. Common threads running through the ethics of ambiguity are the virtue of respect, and the development of a culture of respect is required for the successful understanding and implementation of a pedagogy of ambiguity.

Warfarin-induced Venous Limb Gangrene

PubMed Central

Grim Hostetler, Sarah; Sopkovich, Jennifer; Dean, Steven

2012-01-01

Warfarin is a commonly used anticoagulant that has been associated with several significant cutaneous side effects, most notably warfarin-induced skin necrosis. A lesser known adverse reaction to warfarin is warfarin-induced venous limb gangrene. Both cutaneous adverse effects share the same pathophysiology, but are clinically quite different. The majority of cases of warfarin-induced venous limb gangrene has been in patients with cancer or heparin-induced thrombocytopenia. However, other hypercoagulable disease states, such as the antiphospholipid antibody syndrome, can be associated with venous limb gangrene. In order to increase recognition of this important condition, the authors report a case of warfarin-induced venous limb gangrene in a patient with presumed antiphospholipid antibody syndrome and review the literature on warfarin-induced venous limb gangrene. PMID:23198012

Sharing information about cancer with one's family is associated with improved quality of life.

PubMed

Lai, Carlo; Borrelli, Beatrice; Ciurluini, Paola; Aceto, Paola

2017-10-01

The aim of this study was to investigate the association between cancer patients' ability to share information about their illness with their social network and attachment style dimensions, alexithymia, and quality of life. We hypothesised that ability to share information about one's cancer with family, friends, and medical teams would be positively associated with quality of life and secure attachment and negatively associated with alexithymia. Forty-five cancer patients were recruited from the Psycho-oncology Unit of the San Camillo-Forlanini Hospital in Rome. We collected anamnestic data and self-report data on social sharing ability, quality of life, alexithymia, and attachment. Sharing with family (B = 4.66; SE = 1.82; β = .52; SE = 0.20; t(41) = 2.6; P = .0143) was the only predictor of global health status, and attachment security was the only predictor of mean social sharing (B = 0.25; SE = 0.06; β = .63; SE = 0.14; t(41) = 4.4; P < .0001). Encouraging patients to share information about their experience of cancer may help to improve their quality of life. Attachment security seems to promote social sharing. Psychological assessments of cancer patients should cover both ability to share information about one's cancer with family and attachment security. Copyright © 2016 John Wiley & Sons, Ltd.

Sharing news of a lung cancer diagnosis with adult family members and friends: a qualitative study to inform a supportive intervention.

PubMed

Ewing, Gail; Ngwenya, Nothando; Benson, John; Gilligan, David; Bailey, Susan; Seymour, Jane; Farquhar, Morag

2016-03-01

Extensive research exists on breaking bad news by clinicians. This study examines perspectives of patients and those accompanying them at diagnosis-giving of subsequently sharing news of lung cancer with adult family/friends, and views of healthcare professionals, to inform development of a supportive intervention. Qualitative interviews with 20 patients, 17 accompanying persons; focus groups and interviews with 27 healthcare professionals from four Thoracic Oncology Units. Intervention development workshops with 24 healthcare professionals and six service users with experience of sharing a cancer diagnosis. Framework thematic analysis. Patients and accompanying persons shared news of lung cancer whilst coming to terms with the diagnosis. They recalled general support from healthcare professionals but not support with sharing bad news. Six elements were identified providing a framework for a potential intervention: 1-people to be told, 2-information to be shared, 3-timing of sharing, 4-responsibility for sharing, 5-methods of telling others and 6-reactions of those told. This study identifies the challenge of sharing bad news and a potential framework to guide delivery of a supportive intervention tailored to individual needs of patients. The identified framework could extend the portfolio of guidance on communication in cancer and potentially in other life-limiting conditions. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Finding common ground to achieve a "good death": family physicians working with substitute decision-makers of dying patients. A qualitative grounded theory study.

PubMed

Tan, Amy; Manca, Donna

2013-01-22

Substitute decision-makers are integral to the care of dying patients and make many healthcare decisions for patients. Unfortunately, conflict between physicians and surrogate decision-makers is not uncommon in end-of-life care and this could contribute to a "bad death" experience for the patient and family. We aim to describe Canadian family physicians' experiences of conflict with substitute decision-makers of dying patients to identify factors that may facilitate or hinder the end-of-life decision-making process. This insight will help determine how to best manage these complex situations, ultimately improving the overall care of dying patients. Grounded Theory methodology was used with semi-structured interviews of family physicians in Edmonton, Canada, who experienced conflict with substitute decision-makers of dying patients. Purposeful sampling included maximum variation and theoretical sampling strategies. Interviews were audio-taped, and transcribed verbatim. Transcripts, field notes and memos were coded using the constant-comparative method to identify key concepts until saturation was achieved and a theoretical framework emerged. Eleven family physicians with a range of 3 to 40 years in clinical practice participated.The family physicians expressed a desire to achieve a "good death" and described their role in positively influencing the experience of death.Finding Common Ground to Achieve a "Good Death" for the Patient emerged as an important process which includes 1) Building Mutual Trust and Rapport through identifying key players and delivering manageable amounts of information, 2) Understanding One Another through active listening and ultimately, and 3) Making Informed, Shared Decisions. Facilitators and barriers to achieving Common Ground were identified. Barriers were linked to conflict. The inability to resolve an overt conflict may lead to an impasse at any point. A process for Resolving an Impasse is described. A novel framework for developing Common Ground to manage conflicts during end-of-life decision-making discussions may assist in achieving a "good death". These results could aid in educating physicians, learners, and the public on how to achieve productive collaborative relationships during end-of-life decision-making for dying patients, and ultimately improve their deaths.

Cultural Challenges to Engaging Patients in Shared Decision Making

PubMed Central

Hawley, Sarah T.; Morris, Arden M.

2016-01-01

Objective Engaging patients in their health care through shared decision-making is a priority embraced by several national and international groups. Missing from these initiatives is an understanding of the challenges involved in engaging patients from diverse backgrounds in shared decision-making. In this commentary, we summarize some of the challenges and pose points for consideration regarding how to move toward more culturally appropriate shared decision-making. Discussion The past decade has seen repeated calls for health policies, research projects and interventions that more actively include patients in decision making. Yet research has shown that patients from different racial/ethnic and cultural backgrounds appraise their decision making process less positively than do white, U.S.-born patients who are the current demographic majority. Conclusion While preliminary conceptual frameworks have been proposed for considering the role of race/ethnicity and culture in healthcare utilization, we maintain that more foundational and empirical work is necessary. We offer recommendations for how to best involve patients early in treatment and how to maximize decision making in the way most meaningful to patients. Innovative and sustained efforts are needed to educate and train providers to communicate effectively in engaging patients in informed, shared decision-making and to provide culturally competent health care. PMID:27461943

Cultural challenges to engaging patients in shared decision making.

PubMed

Hawley, Sarah T; Morris, Arden M

2017-01-01

Engaging patients in their health care through shared decision-making is a priority embraced by several national and international groups. Missing from these initiatives is an understanding of the challenges involved in engaging patients from diverse backgrounds in shared decision-making. In this commentary, we summarize some of the challenges and pose points for consideration regarding how to move toward more culturally appropriate shared decision-making. The past decade has seen repeated calls for health policies, research projects and interventions that more actively include patients in decision making. Yet research has shown that patients from different racial/ethnic and cultural backgrounds appraise their decision making process less positively than do white, U.S.-born patients who are the current demographic majority. While preliminary conceptual frameworks have been proposed for considering the role of race/ethnicity and culture in healthcare utilization, we maintain that more foundational and empirical work is necessary. We offer recommendations for how to best involve patients early in treatment and how to maximize decision making in the way most meaningful to patients. Innovative and sustained efforts are needed to educate and train providers to communicate effectively in engaging patients in informed, shared decision-making and to provide culturally competent health care. Published by Elsevier Ireland Ltd.

Patients, care partners, and shared access to the patient portal: online practices at an integrated health system.

PubMed

Wolff, Jennifer L; Berger, Andrea; Clarke, Deserae; Green, Jamie A; Stametz, Rebecca; Yule, Christina; Darer, Jonathan D

2016-11-01

To describe the characteristics and online practices of patients and "care partners" who share explicit access to a patient portal account at a large integrated health system that implemented shared access functionality in 2003. Survey of 323 patients and 389 care partners at Geisinger Health System with linked information regarding access and use of patient portal functionality. Few (0.4%) registered adult patient portal users shared access to their account. Patients varied in age (range: 18-102); more than half had a high school education or less (53.6%). Patient motivations for sharing access included: to help manage care (41.9%), for emergency reasons (29.7%), lack of technology experience (18.4%), or care partner request (10.0%). Care partners were parents (39.8%), adult children (27.9%), spouses (26.2%), and other relatives (6.1%). Patients were more likely than care partners to have inadequate health literacy (54.8% versus 8.8%, P < .001) and less confident in their ability to manage their care (53.0% versus 88.1%; P < .001). Care partners were more likely than patients to perform health management activities electronically (95.5% versus 48.4%; P < .001), access the patient portal (89.2% versus 30.3%; P < .001), and use patient portal functionality such as secure messaging (39.6% versus 13.9%; P < .001). Care partners used their own credentials (89.1%) and patient credentials (23.3%) to access the patient portal. Shared access is an underused strategy that may bridge patients' health literacy deficits and lack of technology experience and that helps but does not fully resolve concerns regarding patient and care partner identity credentials. © The Author 2016. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

The relationship between diversion-related attitudes and sharing and selling buprenorphine.

PubMed

Kenney, Shannon R; Anderson, Bradley J; Bailey, Genie L; Stein, Michael D

2017-07-01

Buprenorphine medication-assisted treatment (B-MAT) is an efficacious and popular outpatient treatment for opioid use disorder. However, the likelihood of buprenorphine diversion is a public health concern. We examined the relationship between attitudes toward diversion as predictors of both sharing and selling buprenorphine. Participants (n=476) were patients undergoing short-term inpatient opioid detoxification. Multinomial logistic regression was used to estimate the adjusted association of sharing and selling buprenorphine with demographics, substance use behaviors, and attitudes toward sharing and selling buprenorphine. Among the two hundred persons who had ever been prescribed buprenorphine (73.4% male, 89% heroin users), 50.5% reported they had shared buprenorphine and 28.0% reported they had sold buprenorphine. Controlling for other covariates, the odds of sharing buprenorphine were 3.17 (95% CI 1.21; 8.32) times higher for persons who agreed that it was "right to share buprenorphine with dope sick friends" than for those who did not agree with this attitude. Attitudes toward selling (OR 2.92; 95% CI 1.35; 6.21) and sharing (OR 4.12; 95% CI 1.64; 10.32) buprenorphine were the only significant correlates of selling, with the odds of selling exponentially greater among persons with favorable attitudes toward sharing or selling buprenorphine. Although considered diversion, sharing B-MAT is normative among B-MAT patients. Assessing B-MAT patients' attitudes about diversion may help identify patients requiring enhanced oversight, education, or intervention aimed at modifying attitudes to reduce their likelihood to share or sell buprenorphine. Copyright © 2017 Elsevier Inc. All rights reserved.

[Sharing patient information using iPads in the introduction of IT for home medical care-construction of a network for home care].

PubMed

Morishima, Atsutomo; Kijima, Yasuaki

2012-12-01

In hospitals, information technology(IT)has been a natural part of care for some time. However, IT has not yet been widely introduced into home care. While performing home care, healthcare providers must carry numerous patients' medical records, and are unable to share the information included in those records with other providers. Thus, we introduced the system of sharing patient information using iPads. This system enables access to patient information regardless of time and place. In addition, we can share information such as X-ray images and computed tomography(CT)scans between different clinics. Thus, we are able to give clearer instructions to patients and other providers in a smoother way. This system could be used to construct a network for home care. In the future, we could aim to share patient information within a much wider network, including families and other kinds of organizations, for optimal care. This system will aid in the development of IT use in home care.

Shared decision-making in medical encounters regarding breast cancer treatment: the contribution of methodological triangulation.

PubMed

Durif-Bruckert, C; Roux, P; Morelle, M; Mignotte, H; Faure, C; Moumjid-Ferdjaoui, N

2015-07-01

The aim of this study on shared decision-making in the doctor-patient encounter about surgical treatment for early-stage breast cancer, conducted in a regional cancer centre in France, was to further the understanding of patient perceptions on shared decision-making. The study used methodological triangulation to collect data (both quantitative and qualitative) about patient preferences in the context of a clinical consultation in which surgeons followed a shared decision-making protocol. Data were analysed from a multi-disciplinary research perspective (social psychology and health economics). The triangulated data collection methods were questionnaires (n = 132), longitudinal interviews (n = 47) and observations of consultations (n = 26). Methodological triangulation revealed levels of divergence and complementarity between qualitative and quantitative results that suggest new perspectives on the three inter-related notions of decision-making, participation and information. Patients' responses revealed important differences between shared decision-making and participation per se. The authors note that subjecting patients to a normative behavioural model of shared decision-making in an era when paradigms of medical authority are shifting may undermine the patient's quest for what he or she believes is a more important right: a guarantee of the best care available. © 2014 John Wiley & Sons Ltd.

Why patient loyalty matters--and how to enhance it.

PubMed

Lee, Thomas H

2014-12-01

Five tactics can help healthcare organizations earn patients' confidence and loyalty-and in turn retain or expand market share: Developing a shared vision about patient care. Committing to measuring the patient experience. Being accountable to the data. Emphasizing team care. Establishing organizational pride.

Serology of Patients with Ulcerative Colitis After Pouch Surgery Is More Comparable with that of Patients with Crohn's Disease.

PubMed

Goren, Idan; Yahav, Lior; Tulchinsky, Hagit; Dotan, Iris

2015-10-01

The serologic status of patients with ulcerative colitis (UC) who develop postoperative pouchitis was compared with that of patients with Crohn's disease (CD) and unoperated patients with UC. Pouch patients were stratified into normal pouch, acute/recurrent acute pouchitis, and chronic pouchitis/Crohn's-like disease of the pouch groups. Antibodies against glycans associated with CD (anti-Saccharomyces cerevisiae, anti-laminaribioside, anti-chitobioside, and anti-mannobioside carbohydrate antibodies [ASCA, ALCA, ACCA, and AMCA, respectively]) were detected and correlated with type of inflammatory bowel disease and pouch behavior. A total of 501 patients with inflammatory bowel diseases were recruited: 250 (50%) CD, 124 (24.7%) unoperated UC, and 127 (25.3%) UC-pouch. At least 1 positive antibody was detected in 77.6% CD, 52.0% UC-pouch and 33.1% unoperated UC (P < 0.0001 for all). ACCA and AMCA prevalence in CD, UC-pouch and unoperated patients with UC were 33.2%, 24.4%, and 16.9% (P = 0.003 for all) and 35.2%, 26.8%, and 7.3%, respectively (P < 0.0001 for all). ALCA and ASCA were more prevalent in patients with CD than unoperated UC and UC-pouch patients. A longer interval since pouch surgery was associated with inflammatory pouch behavior: 12.45, 11.39, and 8.5 years for acute/recurrent acute pouchitis, chronic pouchitis/Crohn's-like disease of the pouch, and normal pouch, respectively, P = 0.01 for all. The prevalence of the CD-associated anti-glycan antibodies ACCA and AMCA is significantly increased in UC-pouch patients, suggesting that pouch surgery may trigger differential immune responses to glycans. The finding that the serology of UC-pouch patients shares similarities with that of patients with CD supports the notion that those 2 inflammatory bowel diseases share a common pathogenic pathway.

Clinical Workflow Observations to Identify Opportunities for Nurse, Physicians and Patients to Share a Patient-centered Plan of Care

PubMed Central

Collins, Sarah A.; Gazarian, Priscilla; Stade, Diana; McNally, Kelly; Morrison, Conny; Ohashi, Kumiko; Lehmann, Lisa; Dalal, Anuj; Bates, David W.; Dykes, Patricia C.

2014-01-01

Patient- and Family-Centered Care (PFCC) is essential for high quality care in the critical and acute-specialty care hospital setting. Effective PFCC requires clinicians to form an integrated interprofessional team to collaboratively engage with the patient/family and contribute to a shared patient-centered plan of care. We conducted observations on a critical care and specialty unit to understand the plan of care activities and workflow documentation requirements for nurses and physicians to inform the development of a shared patient-centered plan of care to support patient engagement. We identified siloed plan of care documentation, with workflow opportunities to converge the nurses plan of care with the physician planned To-do lists and quality and safety checklists. Integration of nurses and physicians plan of care activities into a shared plan of care is a feasible and valuable step toward interprofessional teams that effectively engage patients in plan of care activities. PMID:25954345

Removing Hair Safely

MedlinePlus

... For Consumers Home For Consumers Consumer Updates Removing Hair Safely Share Tweet Linkedin Pin it More sharing ... related to common methods of hair removal. Laser Hair Removal In this method, a laser destroys hair ...

NIST Document Sharing Test Facility

Science.gov Websites

NIST Document Sharing Test Facility This site supports the IHE effort in Document Sharing as part . This test facility is based on the IHE IT Infrastructure Technical Framework. All testing done against that Patient IDs be pre-registered before submitting metadata about them. To allocate new patient IDs

Retrospective interrupted time series examining hypertension and diabetes medicines usage following changes in patient cost sharing in the 'Farmácia Popular' programme in Brazil.

PubMed

Emmerick, Isabel Cristina Martins; Campos, Monica Rodrigues; Luiza, Vera Lucia; Chaves, Luisa Arueira; Bertoldi, Andrea Dâmaso; Ross-Degnan, Dennis

2017-11-03

'Farmácia Popular' (FP) programme was launched in 2004, expanded in 2006 and changed the cost sharing for oral hypoglycaemic (OH) and antihypertensive (AH) medicines in 2009 and in 2011. This paper describes patterns of usage and continuity of coverage for OH and AH medicines following changes in patient cost sharing in the FP. Interrupted time series study using retrospective administrative data. Monthly programme participation (PP) and proportion of days covered (PDC) were the two outcome measures. The open cohort included all patients with two or more dispensings for a given study medicine in 2008-2012. The interventions were an increase in patient cost sharing in 2009 and zero patient cost sharing for key medicines in 2011. A total of 3.6 and 9.5 million patients receiving treatment for diabetes and hypertension, respectively, qualified for the study. Before the interventions, PP was growing by 7.3% per month; median PDC varied by medicine from 50% to 75%. After patient cost sharing increased in 2009, PP reduced by 56.5% and PDC decreased for most medicines (median 60.3%). After the 2011 free medicine programme, PP surged by 121 000 new dispensings per month and PDC increased for all covered medicines (80.7%). Cost sharing was found to be a barrier to continuity of treatment in Brazil's private sector FP programme. Making essential medicines free to patients appear to increase participation and continuity of treatment to clinically beneficial levels (PDC >80%). © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision

PubMed Central

Edwards, Adrian; Elwyn, Glyn

2006-01-01

Abstract Background  Shared decision making has practical implications for everyday health care. However, it stems from largely theoretical frameworks and is not widely implemented in routine practice. Aims  We undertook an empirical study to inform understanding of shared decision making and how it can be operationalized more widely. Method  The study involved patients visiting UK general practitioners already well experienced in shared decision making. After these consultations, semi‐structured telephone interviews were conducted and analysed using the constant comparative method of content analysis. Results  All patients described at least some components of shared decision making but half appeared to perceive the decision as shared and half as ‘patient‐led’. However, patients exhibited some uncertainty about who had made the decision, reflecting different meanings of decision making from those described in the literature. A distinction is indicated between the process of involvement (option portrayal, exchange of information and exploring preferences for who makes the decision) and the actual decisional responsibility (who makes the decision). The process of involvement appeared to deliver benefits for patients, not the action of making the decision. Preferences for decisional responsibility varied during some consultations, generating unsatisfactory interactions when actual decisional responsibility did not align with patient preferences at that stage of a consultation. However, when conducted well, shared decision making enhanced reported satisfaction, understanding and confidence in the decisions. Conclusions  Practitioners can focus more on the process of involving patients in decision making rather than attaching importance to who actually makes the decision. They also need to be aware of the potential for changing patient preferences for decisional responsibility during a consultation and address non‐alignment of patient preferences with the actual model of decision making if this occurs. PMID:17083558

The 2016 Academic Emergency Medicine Consensus Conference, Shared Decision Making in the Emergency Department: Development of a Policy-relevant Patient-centered Research Agenda May 10, 2016, New Orleans, LA.

PubMed

Grudzen, Corita R; Anderson, Jana R; Carpenter, Christopher R; Hess, Erik P

2016-12-01

Shared decision making in emergency medicine has the potential to improve the quality, safety, and outcomes of emergency department (ED) patients. Given that the ED is the gateway to care for patients with a variety of illnesses and injuries and the safety net for patients otherwise unable to access care, shared decision making in the ED is relevant to numerous disciplines and the interests of the United States (U.S.) public. On May 10, 2016 the 16th annual Academic Emergency Medicine (AEM) consensus conference, "Shared Decision Making: Development of a Policy-Relevant Patient-Centered Research Agenda" was held in New Orleans, Louisiana. During this one-day conference clinicians, researchers, policy-makers, patient and caregiver representatives, funding agency representatives, trainees, and content experts across many areas of medicine interacted to define high priority areas for research in 1 of 6 domains: 1) diagnostic testing; 2) policy, 3) dissemination/implementation and education, 4) development and testing of shared decision making approaches and tools in practice, 5) palliative care and geriatrics, and 6) vulnerable populations and limited health literacy. This manuscript describes the current state of shared decision making in the ED context, provides an overview of the conference planning process, the aims of the conference, the focus of each respective breakout session, the roles of patient and caregiver representatives and an overview of the conference agenda. The results of this conference published in this issue of AEM provide an essential summary of the future research priorities for shared decision making to increase quality of care and patient-centered outcomes. © 2016 by the Society for Academic Emergency Medicine.

A review of treatment options for Graves' disease: why total thyroidectomy is a viable option in selected patients.

PubMed

Mohan, Vinuta; Lind, Robert

2016-01-01

Graves' disease is the most common cause of hyperthyroidism. If left untreated, patients may have multiple systemic complications such as cardiac, reproductive, and skeletal disease. Thionamides, such as methimazole and propylthiouracil, and I(131) iodine ablation are the most commonly prescribed treatment for Graves' disease. Total thyroidectomy is often overlooked for treatment and is usually only offered if the other options have failed. In our case, we discuss a patient who was admitted to our medical center with symptomatic hyperthyroidism secondary to long-standing Graves' disease. She had a history of non-compliance with medications and medical clinic follow-up. The risks and benefits of total thyroidectomy were explained and she consented to surgery. A few months after the procedure, she was biochemically and clinically euthyroid on levothyroxine. She had no further emergency room visits or admissions for uncontrolled thyroid disease. Here we review the advantages and disadvantages of the more typically prescribed treatments, thionamides and I(131)iodine ablation. We also review the importance of shared decision making and the benefits of total thyroidectomy for the management of Graves' disease. Given the improvement in surgical techniques over the past decade and a significant reduction of complications, we suggest total thyroidectomy be recommended more often for patients with Graves' disease.

The Book of Job: a 2,500-year-old current guide to the practice of oncology: the nexus of medicine and spirituality.

PubMed

Patterson, Stephen; Balducci, Lodovico; Meyer, Russell

2002-01-01

To establish the role of ancient literature and religious tradition to the modern practice of oncology; foster awareness of practicing in a historical context resulting from different traditions; and propose a spiritual context for the practice of oncology and explore methods to highlight this perspective in cancer education. Contextual and content analysis of a religious text shared by the most common religious traditions of the West (Christianity, Judaism, and Islam). The origin of suffering eludes all logical explanations. All religious traditions affirm that the sufferer should be heard, cared for, and kept part of the human consortium, and under no circumstances blamed for the disease. In terms of oncology practice this means that the treatment should be negotiated with the patient according to his or her need; that physicians' obligations for care continues after the treatment fails, and that patients' lifestyles or poor compliance should not be blamed for poor outcomes. The Book of Job supports a spiritual perspective in oncology practice, indicating that patient care is a holistic endeavor. This perspective is the key to dealing with common interactive problems, such as adversarial relations between patient and provider in face of death and suffering, and more important, may promote care beyond treatment of the disease.

A pilot study to compare the cerebral hemodynamics between patients with obstructive sleep apnea syndrome (OSA) and periodic limb movement syndrome (PLMS) during nocturnal sleep with near-infrared spectroscopy (NIRS)

NASA Astrophysics Data System (ADS)

Zhang, Zhongxing; Schneider, Maja; Laures, Marco; Fritschi, Ursula; Hügli, Gordana; Lehner, Isabella; Qi, Ming; Khatami, Ramin

2014-03-01

Obstructive sleep apnea syndrome (OSA) and periodic limb movement in sleep syndrome (PLMS) are two common sleep disorders. Previous studies showed that OSA and PLMS share common features, such as increased cardio-vascular risk, both apnea events and limb movements occur periodically, they are usually associated with cortical arousals, and both of them can induce declines in peripheral oxygen saturation measured with pulse oximetry. However, the question whether apnea events and limb movements also show similar characteristics in cerebral hemodynamic and oxygenation has never been addressed. In this pilot study, we will first time compare the cerebral hemodynamic changes induced by apnea events and limb movements in patients with OSA (n=4) and PLMS (n=4) with NIRS. In patients with OSA, we found periodic oscillations in HbO2, HHb, and blood volume induced by apnea/hypopnea events, HbO2 and HHb showed reverse changing trends. By contrast, the periodic oscillations linked to limb movements were only found in HbO2 and blood volume in patients with PLMS. These findings of different cerebral hemodynamics patterns between apnea events and limb movements may indicate different regulations of nervous system between these two sleep disorders.

Protecting patient privacy when sharing patient-level data from clinical trials.

PubMed

Tucker, Katherine; Branson, Janice; Dilleen, Maria; Hollis, Sally; Loughlin, Paul; Nixon, Mark J; Williams, Zoë

2016-07-08

Greater transparency and, in particular, sharing of patient-level data for further scientific research is an increasingly important topic for the pharmaceutical industry and other organisations who sponsor and conduct clinical trials as well as generally in the interests of patients participating in studies. A concern remains, however, over how to appropriately prepare and share clinical trial data with third party researchers, whilst maintaining patient confidentiality. Clinical trial datasets contain very detailed information on each participant. Risk to patient privacy can be mitigated by data reduction techniques. However, retention of data utility is important in order to allow meaningful scientific research. In addition, for clinical trial data, an excessive application of such techniques may pose a public health risk if misleading results are produced. After considering existing guidance, this article makes recommendations with the aim of promoting an approach that balances data utility and privacy risk and is applicable across clinical trial data holders. Our key recommendations are as follows: 1. Data anonymisation/de-identification: Data holders are responsible for generating de-identified datasets which are intended to offer increased protection for patient privacy through masking or generalisation of direct and some indirect identifiers. 2. Controlled access to data, including use of a data sharing agreement: A legally binding data sharing agreement should be in place, including agreements not to download or further share data and not to attempt to seek to identify patients. Appropriate levels of security should be used for transferring data or providing access; one solution is use of a secure 'locked box' system which provides additional safeguards. This article provides recommendations on best practices to de-identify/anonymise clinical trial data for sharing with third-party researchers, as well as controlled access to data and data sharing agreements. The recommendations are applicable to all clinical trial data holders. Further work will be needed to identify and evaluate competing possibilities as regulations, attitudes to risk and technologies evolve.