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

以患者为中心的治疗成人脊柱裂尿失禁的方法

• 批准号: 10742128
• 负责人: Konrad Szymanski
• 金额: $ 23.78万
• 依托单位: INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-01 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10742128
• 关键词: Acceleration; Adolescent; Adult; Age; Award; Behavioral; Caring; Child; Clinical; Complex; Development; Disabled Persons; Disease; Education; Employment Opportunities; Ensure; Family; Future; Goals; Health; Knowledge; Learning; Longevity; Medical; Medical Care Team; Mentored Patient-Oriented Research Career Development Award; Methods; Operative Surgical Procedures; Outcome; Patient Outcomes Assessments; Patients; Persons; Population; Provider; Qualitative Research; Quality of life; Questionnaires; Randomized, Controlled Trials; Research; Sexuality; Social support; Spinal Dysraphism; Testing; Thinking; Training; Urinary Incontinence; Urology; Voice; Work; comorbidity; design; experience; family support; health related quality of life; improved; innovation; interest; patient advocacy group; patient oriented; patient-clinician communication; prospective; prototype; recruit; shared decision making; tool; urologic; usability

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.

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)，这是一种 对于大多数患有 SB 的儿童、青少年和成人来说，这是一个挑战。随着 SB 患者年龄的增长，UI 会陷入困境 一个更加复杂的背景。这包括改变独立性、家庭和社会支持的水平， 浪漫和性经历，以及教育和就业机会，所有这些都与 既往行为、药物和外科 UI 治疗。以患者为中心的方法通常允许这些 重叠的、有时甚至是相互竞争的问题需要得到更好的评估和管理。可惜没有工具 存在的目的是帮助 SB 成年人在其他问题的背景下权衡 UI，以确定 UI 是否对其产生影响 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） 家庭或医疗团队）。本 R03 提案中概述的工作将建立在我的 K23 奖（K23 DK113227），我在那里开发了 MyGoal-C 应用程序，这是一个帮助 SB 儿童确定对治疗 UI 和治疗的兴趣的工具 建立自己的节制目标。对于这个 R03 奖项，我建议构建一个类似的工具（即 MyGoal-A 应用程序） 针对患有 SB 的残疾成年人。成人应用程序与 MyGoal-C 应用程序的区别之一是它缺乏 一个父组件。此外，SB 成人将有更具体和个性化的 UI 治疗目标 与工作、性行为和合并症相关的信息将集成到 MyGoal-A 应用程序中。专注于成人的应用程序 应允许成年患者与其临床医生之间进行更有效的共享决策（SDM） 帮助患者确定最重要的健康结果，然后与临床医生合作确定 最有可能实现这些目标的治疗方法。我预计 MyGoal-A 应用程序将对成人产生重大影响 SB 护理，我假设这将改善这些人的健康相关生活质量 (HRQOL) 患者。 R03 提案的具体目标是： (1) 让 SB 成年人更好地理解他们的 UI 在其他竞争性护理问题方面的经验，以及 (2) 采用混合方法来 a) 调整 MyGoal-C 应用程序以供 SB 成人使用，并且 b) 对 MyGoal-A 应用程序进行可用性测试。在目标 1 中， 我们将通过患者权益团体在线招募 20 名 SB 成年人，使用在线调查问卷来详细说明 患者的经历和节制的优先事项。在目标 1 的基础上，我们将使用以下方法开发 MyGoal-A 应用程序 以我的 K23 奖项的 MyGoal-C 应用程序为起点。使用定性研究方法 整合设计思维方法，患者（N = 20）和泌尿科提供者（N = 8）都将参与其中 创建和完善 MyGoal-A 应用程序原型（目标 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 的工作将达到顶峰 最终确定了 MyGoal - 准备进行实际测试的应用程序。 R03 提案中针对 SB 成人的研究将 导致在 SB 成人中进行 MyGoal-A 应用程序的前瞻性随机对照试验的 R01 级申请， 重点关注目标选择、目标实现、UI 更改、SDM、医患沟通和 HRQOL。