Experiences and Perspectives on Advance Care Planning among Individuals Living with Serious Physical Disabilities.

BACKGROUND: Despite frequent encounters with the healthcare system and high risk for secondary conditions, it is unclear how frequently individuals living with serious physical disabilities document advance directives (AD) or engage in advance care planning (ACP). Their perspectives on these topics are largely unknown. OBJECTIVE: We aimed to characterize the perspectives of individuals with serious physical disabilities receiving care from two different healthcare delivery settings on the value of AD and ACP. DESIGN: Key informant interviews were conducted, audiorecorded, transcribed, and analyzed using thematic analysis and constant comparative analysis. SUBJECTS: Twenty-five adults with serious physical disabilities were interviewed. RESULTS: Five organizing themes emerged as follows: (A) AD is a right versus responsibility, (B) past medical experiences influence ACP engagement, (C) ACP requires relationship-centered decision support, (D) concerns for care after death, and (E) suggestions for improving ACP experiences. Participants wished to engage in a relationship-centered approach to ACP, yet voiced hesitation due to experiences of significant medical bias and mistreatment, typically surrounding judgments of their quality of life. CONCLUSIONS: Better health professional training in ACP and heightened awareness of the unique ACP considerations pertaining to people with disabilities are recommended.

A Narrative Review of Patient-reported Outcomes in Overactive Bladder: What is the Way of the Future?

CONTEXT: Debate exists on overactive bladder (OAB) treatment-response assessment in clinical trials and the nature and shortcomings of the different endpoints used in OAB clinical research. OBJECTIVE: To evaluate current evidence and tools that measure OAB treatment response in clinical trials and to inform the development of a new multidimensional patient-reported outcome (PRO) that could be used as a primary endpoint in OAB trials. EVIDENCE ACQUISITION: We conducted a narrative review of OAB literature available in the PubMed database published between January 1, 2004 and June 30, 2015. Eighty articles were selected for full text review. EVIDENCE SYNTHESIS: The assessment of treatment outcomes in OAB is challenging due to the heterogeneity of symptoms and reliance on PROs. OAB studies report a high level of placebo effect and the placebo response is poorly understood. We found significant correlations between PRO measures and bladder diaries. There is evidence of several issues with the bladder diary: burden, over/underestimation, recall period, and lack of validation. Trials for other conditions-interstitial cystitis, benign prostatic hyperplasia, headache, and restless legs syndrome-have used symptom scales rather than diaries to measure treatment outcomes and some now incorporate PRO measures as primary, coprimary, and secondary endpoints. The International Consultation on Incontinence Research Society recommends evaluation of satisfaction, symptoms, health-related quality of life, and adverse events. CONCLUSIONS: There is strong evidence of the shortcomings in current approaches to measuring OAB outcomes in clinical trials and recognition that a new simpler approach which incorporates symptom and health-related quality of life assessment could provide a more comprehensive, standardized approach to OAB assessment. PATIENT SUMMARY: Overactive bladder is a urinary syndrome. Individuals experience different symptoms to varying degrees, which poses difficulties in accurately measuring the effect of treatment. This review found evidence and recommendations that propose a simpler but more comprehensive way to measure treatment outcomes.

The comparative experiences of women in control: diabetes self-management education in a virtual world.

The purpose was to characterize participants' experiences of a diabetes self-management (DSM) education program delivered via a virtual world (VW) versus a face-to-face (F2F) format. Participants included a randomly selected sample of participants who completed the Women in Control study. Four focus groups were conducted with 32 participants. Four researchers coded the data and conducted a qualitative thematic analysis. Four overarching themes were identified. Three domains apply to both VW and F2F formats, including (1) the value of DSM knowledge gained, (2) cultivating DSM attitudes and skills, and (3) the value of peer-derived social support. The fourth domain is labeled positive technological development for DSM (VW condition only). VW and F2F groups both reported mastery of DSM knowledge, attitudes, and skills, and there were no differences in peer-derived social support between groups. The technological aspects of VW participation afforded VW participants a unique sense of personal agency and diabetes self-efficacy not reported by F2F participants. DSM education in a VW is feasible and educational outcomes are similar to a F2F classroom experience. Furthermore, learning DSM skills in a VW offers unique advantages in supporting personal agency for health behavior change. Further research is warranted.