A patient-centered approach to urinary incontinence in adults with spina bifida

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Spina bifida (SB) is a disease requiring life-long urological care, particularly for urinary incontinence (UI), a challenge for most children, adolescents and adults with SB. As people with SB age, UI becomes enmeshed in an ever more complex context. This includes changing levels of independence, family and social support, romantic and sexual experiences, as well as education and employment opportunities, all combined with previous behavioral, medical and surgical UI treatments. A patient-centered approach allows these often overlapping, and sometimes competing, concerns to be better evaluated and managed. Unfortunately, no tool exists to assist SB adults to weigh UI in the context of other concerns, to decide whether UI impact on their lives warrants treatment, and/or to help them select treatment goals meaningful to them (and not just to their family or health-care team). The work outlined in this R03 proposal will build on my K23 award (K23 DK113227) where I developed the MyGoal-C app, a tool to help SB children identify interest in treating UI and establish their own continence goals. For this R03 award, I propose to build a similar tool (i.e., MyGoal-A app) targeting disabled adults with SB. One factor that will set the adult app apart from the MyGoal-C app is its lack of a parental component. Additionally, SB adults will have more specific and personalized UI treatment goals related to work, sexuality, and comorbid conditions to be integrated in the MyGoal-A app. An adult-focused app should allow more effective shared decision making (SDM) between adult patients and their clinicians by helping patients identify health outcomes of highest priority, and then to work with their clinicians to determine treatments most likely to achieve them. I anticipate that the MyGoal-A app will have significant impact on adult SB care, and I hypothesize that this will lead to improved health-related quality of life (HRQOL) for these patients. The specific aims for the R03 proposal are to: (1) Engage adults with SB to better understand their UI experiences in the context of other competing care issues, and (2) Employ a mixed-methods approach to a) adapt the MyGoal-C app for use with SB adults and b) perform usability testing of the MyGoal-A app. In Aim 1, we will use online questionnaires with 20 SB adults recruited online through patient advocacy groups to detail patient experiences and priorities for continence. Building on Aim 1, we will develop the MyGoal-A app using the MyGoal-C app from my K23 award as a starting point. Using a qualitative research approach that integrates design thinking methods, both patients (N=20) and urology providers (N=8) will be involved in the creation and refinement of the MyGoal-A app prototype (Aim 2a). We will then conduct two rounds of usability testing with SB adults (N=20) using a mixed-methods approach (Aim 2b). The work of Aim 2 will culminate in a finalized MyGoal-A app ready for real-world testing. The research with SB adults from this R03 proposal will lead to a R01-level application for a prospective randomized controlled trial of the MyGoal-A app in SB adults, focused on goal selection, goal attainment, UI changes, SDM, patient-provider communication and HRQOL.