Factors associated with disease self-efficacy in individuals aging with a disability.

Self-management of a disability consists of treatment adherence, obtaining information about the disease and treatment options, caring for oneself, participating in decisions, and maintaining social relationships and emotional balance. Understanding and measuring an individual's beliefs about their ability to successfully self-manage and live well with a disability allows researchers and clinicians to better target interventions aimed at increasing disability management self-efficacy (DMSE). The purpose of this study was to examine the associations between demographic and clinical indicators, and self-efficacy for DMSE in individuals with chronic physical conditions. Adults (N = 815) with muscular dystrophy, multiple sclerosis, spinal cord injury, or post-polio syndrome completed a self-report mailed survey assessing DMSE, perceived social support, depression symptoms, resilience, fatigue, pain interference, satisfaction with participation in social roles, physical function, and demographics. A cross-sectional regression model was used to examine the associations between the clinical and demographic factors, and DMSE. The model explained 67% of the variance in DMSE. Satisfaction with participation in social roles, resilience, pain interference, social support, and fatigue were statistically significant. Better social functioning, more resilience, and less pain and fatigue were most strongly associated with DMSE. Interventions aimed at increasing DMSE should include strategies for improving social participation.

Development of a Conceptual Framework of Sexual Well-being for Women with Physical Disability.

BACKGROUND: Women with physical disability (WWPD) experience more sexual dysfunction, are typically less sexually active, and engage in fewer intimate relationships than women without physical disability. Although patient-reported outcome measures can help researchers and providers to meet the needs of this population, current measures fail to reflect the relevant experiences of WWPD. The purposes of this study were to 1) understand the experiences of WWPD related to sexual wellness, 2) identify the gaps in the current Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction, and 3) develop a conceptual framework for the measurement of sexual well-being on which a new supplemental measure will be built. METHODS: WWPD (n = 59) were recruited from an online health registry through a large academic medical center and took part in semistructured focus groups and interviews exploring experiences with sexuality, intimate relationships, sexual function, and sexual and reproductive health care. Interviews were transcribed and coded using an inductive approach to thematic analysis. RESULTS: Participants expressed that their sexual well-being extends beyond simply physical function and includes aspects of their environment, society, and intrapersonal and interpersonal factors. From themes that emerged from the qualitative data, we developed a conceptual framework of sexual well-being, which includes sexual health and sexual self-efficacy. The framework is composed of five constructs that impact sexual health and sexual self-efficacy: physical factors, intrapersonal factors, environmental factors, relationships and partner opportunity, and stigma. CONCLUSIONS: This conceptual framework can be used to develop patient-reported outcome measures items relevant to the experiences of WWPD, facilitate conversations between providers and patients, and identify areas to target for sexual wellness interventions.

mHealth and patient generated health data: stakeholder perspectives on opportunities and barriers for transforming healthcare.

BACKGROUND: Wearable devices, mobile health apps, and geolocation technologies place the ability to track, monitor and report data in the individuals' hands - or on their bodies. These innovations create an opportunity for "connected health," where individuals collect data outside of the healthcare encounter and report it to care providers. Collection of such patient-generated health data (PGHD) has the potential to impact the delivery of healthcare through remote monitoring, and by allowing patients and healthcare teams to provide targeted and efficient care that aligns with the health status of individual patients. METHODS: To understand the value and barriers associated with clinical integration of PGHD we engaged a range of stakeholders, examining their perspectives and experiences of PGHD use. We conducted open-ended interviews with healthcare consumers (patients and care partners), healthcare providers, and healthcare administrators. Open recruitment and purposive sampling were utilized to identify participants that represented the breadth of PGHD use in research and clinical care. Interview guides focused on the value and barriers of PGHD use. Interviews were recorded, transcribed, and analyzed for emergent themes. RESULTS: Themes emerged around the value of PGHD to support care decisions and improve patient-provider communication and engagement, and the promise of applying PGHD to formal care pathways and measurement-based care. Significant barriers included data validity and actionability, and the burden of integrating PGHD into existing care processes. Interviews highlighted areas for future research to better understand how PGHD can advance care transformation. CONCLUSIONS: These findings provide rich context for understanding the experiences and needs of the individuals who interface with PGHD. Translating advances in technology and data tracking into successful clinical implementation requires understanding how stakeholders conceptualize and make use of PGHD, the potential value that PGHD can add to care, and the challenges that may limit PGHD's promise. Our results illustrate the value and challenges associated with health-system implementation of PGHD. Efforts to increase the scale and spread of PGHD will benefit from an approach that addresses the value and challenges PGHD brings to clinical care.

Development of a resilience item bank and short forms.

PURPOSE: The purpose of this study was to develop a publicly available, psychometrically sound item bank and short forms for measuring resilience in any population, but especially resilience in individuals with chronic medical conditions or long-term disability. RESEARCH METHODS: A panel of 9 experts including disability researchers, clinical psychologists, and health outcomes researchers developed a definition of resilience that guided item development. The rigorous methodology used focus groups, cognitive interviews, and modern psychometric theory quantitative methods, including item response theory (IRT). Items were administered to a sample of people with chronic medical conditions commonly associated with disability (N = 1,457) and to a general population sample (N = 300) representative of the Unites States general population with respect to age, gender, race, and ethnicity. RESULTS: The final item bank includes 28 items calibrated to IRT with the scores on a T-metric. A mean of 50 represents the mean resilience in the general population sample. Four and eight item short forms are available, and their scores are highly correlated with the item bank score (r ≥ .94). Reliability is excellent across most of the resilience continuum. Initial analyses provide strong support for validity of the score. CONCLUSIONS: The findings support reliability and validity of the University of Washington Resilience Scale (UWRS) for assessing resilience in any population, including individuals with chronic health conditions or disabilities. It can be administered using computerized adaptive testing or by short forms. (PsycInfo Database Record (c) 2020 APA, all rights reserved).