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

脊柱裂（SB）是一种需要终身泌尿外科护理的疾病，特别是尿失禁（UI）， 对于大多数儿童，青少年和成人SB的挑战。随着SB年龄的增长，UI变得沉迷于 一个更加复杂的背景。这包括改变独立、家庭和社会支持的水平， 浪漫和性经验，以及教育和就业机会，所有这些都与 以前的行为，医疗和外科UI治疗。以患者为中心的方法通常允许这些 需要更好地评估和管理相互重叠、有时甚至相互竞争的问题。不幸的是，没有工具 存在的目的是帮助SB成年人在其他问题的背景下权衡UI，以决定UI是否影响他们的生活。 生命需要治疗，和/或帮助他们选择对他们有意义的治疗目标（而不仅仅是对他们的 家庭或医疗团队）。本R 03提案中概述的工作将建立在我的K23奖（K23 DK 113227），在那里我开发了MyGoal-C应用程序，这是一个帮助SB儿童识别治疗UI兴趣的工具， 确立自己的奋斗目标。对于这个R 03奖，我建议建立一个类似的工具（即，MyGoal-A应用程序） 将成人应用程序与MyGoal-C应用程序区分开来的一个因素是它缺乏 一个父母的组成部分。此外，SB成人将有更具体和个性化的UI治疗目标 与工作、性行为和共病状况相关的信息整合到MyGoal-A应用程序中。 应允许成人患者和他们的临床医生之间更有效的共享决策（SDM）， 帮助患者确定最优先的健康结果，然后与他们的临床医生合作， 治疗最有可能实现这些目标。我预计，MyGoal-A应用程序将对成年人产生重大影响， SB护理，我假设这将导致这些患者的健康相关生活质量（HRQOL）改善 患者R 03建议的具体目标是：（1）让成年人参与SB，以更好地了解他们的UI 在其他相互竞争的护理问题的背景下的经验，和（2）采用混合方法的方法a） 调整MyGoal-C应用程序以供SB成人使用，以及B）执行MyGoal-A应用程序的可用性测试。在目标1中， 我们将使用在线问卷，通过患者倡导团体在线招募20名SB成人， 患者经验和优先考虑的问题。在目标1的基础上，我们将使用 我的K23奖的MyGoal-C应用程序作为起点。采用定性研究方法， 整合设计思维方法，患者（N=20）和泌尿外科提供者（N=8）将参与 创建和完善MyGoal-A应用程序原型（Aim 2a）。然后我们将进行两轮可用性测试 使用混合方法对SB成人（N=20）进行测试（目标2b）。目标2的工作将在一个 MyGoal-A应用程序已准备好进行真实测试。来自R 03提案的SB成人研究将 导致R 01级应用程序在SB成人中进行MyGoal-A应用程序的前瞻性随机对照试验， 重点关注目标选择、目标实现、UI变更、SDM、患者-提供者沟通和HRQOL。

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.