How older men live with stress urinary incontinence: Patient experience and navigation to treatment.

OBJECTIVES: To explore the context in which older men navigate treatment for stress urinary incontinence (SUI) following prostate surgery by characterizing lived experience of men with symptomatic SUI. SUBJECTS/PATIENTS AND METHODS: Mixed method study using surveys and semistructured interviews to examine a cohort of men who underwent evaluation for treatment of postprostatectomy SUI. RESULTS: Thirty-six men were interviewed after consultation for SUI and 31 had complete quantitative clinical data. Twenty-six underwent surgery and 10 chose no surgical intervention. In qualitative interviews, respondents experienced substantial decline in quality of life due to incontinence citing concerns associated with use of pads and worrying about incontinence. Most patients reported "workarounds"-efforts to mitigate or manage incontinence including Kegels, physical therapy, and garments. Participants also reported lifestyle changes including less strenuous physical activity, less sexual activity, and/or fewer social gatherings. Patients then described a "breaking point" where incontinence workarounds were no longer sufficient. After seeking evaluation, men described challenges in exploring treatment for SUI, including access to care and provider knowledge of treatment options. CONCLUSION: In a novel study of patients living with SUI a predictable lived experience was observed that culminated in a desire for change or "breaking point." In all men, this led to treatment-seeking behaviors and for many it led to SUI intervention. Despite effective treatments, patients continue to meet barriers gaining access to SUI evaluation and treatment.

Patient-identified Treatment Attributes Among Older Men With Stress Urinary Incontinence: A Qualitative Look at What Matters to Patients Making Treatment Decisions.

OBJECTIVE: To investigate which treatment attributes matter to patients with stress urinary incontinence (SUI), why and how they matter, and the context in which patients consider treatment attributes. Nearly a quarter of older men have decisional regret following SUI treatment. Knowledge of what matters to patients when making SUI treatment decisions is necessary to improve goal-concordant care. METHODS: We conducted semi-structured interviews with 36 men ≥65 years of age with SUI. Semi-structured interviews were conducted by telephone and transcribed. Four researchers (L.H., N.S., E.A., C.B.) coded the transcripts using both deductive and inductive codes to identify and describe treatment attributes. RESULTS: We identified 5 patient-derived treatment attributes of interest among older men with SUI who have faced treatment decisions: (1) dryness, (2) simplicity, (3) potential need for future intervention, (4) treatment regret/satisfaction, and (5) surgical avoidance. These themes reliably emerged in our patient-centered interviews from within various contexts, including prior negative healthcare experiences, the impact of incontinence on daily and quality of life, and the mental health burden of incontinence, among others. CONCLUSION: Men with SUI weigh a variety of treatment attributes in addition to dryness, a traditional clinical endpoint, and do so within the context of their individual experience. These additional attributes, such as simplicity, may run counter to the goal of dryness. This suggests that traditional clinical endpoints alone are not adequate for counseling patients. Contextualized patient-identified treatment attributes should be used to create decision-support materials to promote goal-concordant SUI treatment.

Prosthesis preferences for those with upper limb loss: Discrete choice study of PULLTY® for use in regulatory decisions.

Introduction: The patient's voice in shared decision-making has progressed from physician's office to regulatory decision-making for medical devices with FDA's Patient Preference Initiative. A discrete-choice preference measure for upper limb prosthetic devices was developed to investigate patient's risk/benefit preference choices for regulatory decision making. Methods: Rapid ethnographic procedures were used to design a discrete-choice measure describing risk and benefits of osseointegration with myoelectric control and test in a pilot preference study in adults with upper limb loss. Primary outcome is utility of each choice based conjoint (CBC) attribute using mixed-effects regression. Utilities with and without video, and between genders were compared. Results: Strongest negative preference was for avoiding infection risk (B = -1.77, p < 0.001) and chance of daily pain (B = -1.22, p, 0.001). Strongest positive preference was for attaining complete independence when cooking dinner (B = 1.62, p < 0.001) and smooth grip patterns at all levels (B = 1.62, B = 1.28, B = 1.26, p < 0.001). Trade-offs showed a 1% increase in risk of serious/treatable infection resulted in a 1.77 decrease in relative preference. There were gender differences, and where video was used, preferences were stronger. Conclusions: Strongest preferences were for attributes of functionality and independence versus connectedness and sensation but showed willingness to make risk-benefit trade-offs. Findings provide valuable information for regulatory benefit-risk decisions for prosthetic device innovations. Trial Registration: This study is not a clinical trial reporting results of a health care intervention so is not registered.

The Role of Care Navigators Working with People with Dementia and Their Caregivers.

BACKGROUND: Care navigation is an approach to personalized care management and care coordination that can help overcome barriers to care. Care navigation has not been extensively studied in dementia, where health care workforce innovations are needed as a result of increasing disease prevalence and resulting costs to the health care system. OBJECTIVE: To identify facilitators and barriers to care navigation in dementia and to assess dementia caregiver satisfaction with care navigation. METHODS: Methods include qualitative research (interviews, focus groups, observations) with "Care Team Navigators" (CTNs) who were part of a dementia care navigation program, the Care Ecosystem, and a quantitative survey with caregivers about their experiences with CTNs. Transcripts were analyzed to identify themes within the data. RESULTS: CTNs identified the following facilitators to care navigation in dementia: working closely with caregivers; providing emotional support; tailoring education and resources; and coordinating with a clinical team around issues ranging from clinical questions to financial and legal decision-making. The barriers CTNS identified included burn-out, the progressive nature of the disease; coordinating with primary care providers; and identifying resources for dyads who are low-income, do not speak English, or live in rural areas. Caregivers across both sites highly rated CTNs, though satisfaction was higher among those in Nebraska and Iowa. CONCLUSIONS: Innovative approaches to care delivery in dementia are crucial. Care navigation offers a feasible model to train unlicensed people to deliver care as a way to deliver larger-scale support for the growing population of adults living with dementia and their caregivers.