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.

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.

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).

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.