A patient-centered approach to urinary incontinence and quality of life in childrenand adolescents with spina bifida

以患者为中心的治疗脊柱裂儿童和青少年尿失禁和生活质量的方法

• 批准号: 10380173
• 负责人: Konrad Szymanski
• 金额: $ 16.73万
• 依托单位: INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-06-01 至 2024-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10380173
• 关键词: Address; Adolescent; Adult; Award; Caregivers; Caring; Cellular Phone; Child; Child Care; Clinic; Clinical; Clinical Research; Communication; Decision Making; Deterioration; Development; Dimensions; Ensure; Environment; Evaluation; Evidence based practice; Funding; Future; Goals; Health; Health Professional; Healthcare; Healthcare Systems; Individual; Intervention; K-Series Research Career Programs; Kidney; Life; Measures; Medical; Mentored Patient-Oriented Research Career Development Award; Mentors; Methods; Monitor; Neuraxis; Outcome; Patient Care; Patient Outcomes Assessments; Patients; Persons; Physical Function; Prospective Studies; Qualitative Research; Quality of life; Renal function; Research; Research Design; Research Methodology; Risk; Site; Social Functioning; Spinal Dysraphism; Surgical Management; Symptoms; System; Testing; Therapeutic; Thinking; Time; Training; Urinary Incontinence; Voice; Work; career development; cohort; congenital anomaly; design; diaries; disability; experience; health care delivery; health goals; health related quality of life; improved; individual patient; innovation; interest; patient oriented; patient population; patient-clinician communication; preference; preservation; prospective; satisfaction; shared decision making; tool; urologic

Most people with spina bifida (SB) suffer from urinary incontinence (UI), necessitating life-long urological care. Health professionals have assumed that continence, achieved by medical or surgical management, leads to better health-related quality of life (HRQOL) in people with SB. However, studies have failed to demonstrate this association. Because SB results in a multisystem disability, UI may not be the only, or even primary, determinant of HRQOL in people with SB. To respond to individuals’ preferences and needs, clinicians must focus on patients’ individual health goals across several dimensions (e.g., symptoms; physical and social function) and determine how well they are met. Only by identifying patients interested in UI treatments, and helping them define their therapeutic goals, will we be able to determine if improving UI increases HRQOL. My long-term goal is to use my clinical and research expertise to optimize children’s SB care, which is currently disconnected from patient-centered goals and evidence-based practice. My short-term goal is to develop a tool (MyGoal) to improve how we approach UI decisions with SB patients. This tool would offer many advantages, including simplifying decision making by helping patients articulate what is important to them, framing the discussion, and aligning treatments toward those goals. Finally, this approach should allow for effective shared decision making (SDM) by letting patients select health outcomes of highest priority, and clinicians determine treatments most likely to achieve them. By using the tool to achieve goal setting and attainment, we hypothesize that patients will experience greater SDM, satisfaction with patient-provider communication, and HRQOL. Therefore, the specific aims of this career development award are to: (1) Engage children with SB to better understand their experience with UI in the context of other competing care issues; (2) Employ a mixed- methods approach to develop and refine the MyGoal tool to identify SB patients interested in addressing UI and establish their continence goals; and (3) Employ a ‘before-after’ prospective study design at a single site to measure the impact of the MyGoal tool on SDM, children’s satisfaction with patient-provider communication, and their HRQOL. The work proposed in this application will have a significant impact by improving SB patient care through the use of patient-centered tools. In the future, we anticipate applying for R03-level funding to develop the MyGoal tool for adults. We also anticipate applying for R01-level funding to evaluate interventions targeting patient-centered goals in SB across several healthcare systems and to monitor renal function prospectively, using the patient cohort from the K23 award. This application will serve to advance my expertise in qualitative research, including design-thinking methods, patient communication and SDM, patient-reported outcome evaluation, and cutting-edge quantitative study design and analysis. Receiving this award is essential to my career development, as it will provide me with further practical research experience and didactic training, within a team of experienced and encouraging mentors in a patient-centered research environment.

大多数脊柱裂 (SB) 患者患有尿失禁 (UI)，需要终生泌尿科护理。 卫生专业人员认为，通过药物或手术治疗实现的节制会导致 SB 患者的健康相关生活质量 (HRQOL) 更好。然而，研究未能证明 这个协会。由于 SB 会导致多系统故障，UI 可能不是唯一的，甚至不是主要的， SB 患者 HRQOL 的决定因素。为了满足个人的偏好和需求，临床医生必须 关注患者多个维度的个人健康目标（例如症状、身体和社会） 功能）并确定它们的满足程度。仅通过识别对 UI 治疗感兴趣的患者，以及 帮助他们确定治疗目标，我们是否能够确定改善 UI 是否会提高 HRQOL。我的 长期目标是利用我的临床和研究专业知识来优化儿童 SB 护理，目前正在 与以患者为中心的目标和基于证据的实践脱节。我的短期目标是开发一个工具 (MyGoal) 改进我们对 SB 患者进行 UI 决策的方式。该工具将提供许多优点， 包括通过帮助患者阐明对他们来说重要的事情来简化决策，制定 讨论，并根据这些目标调整治疗方法。最后，这种方法应该允许有效的共享 决策（SDM），让患者选择最优先的健康结果，并由临床医生决定 最有可能实现这些目标的治疗方法。通过使用该工具来实现目标设定和实现，我们 假设患者将体验到更大的 SDM、对医患沟通的满意度，以及 人力资源生活质量。因此，该职业发展奖的具体目标是：（1）让SB儿童参与 在其他竞争性护理问题的背景下，更好地了解他们对 UI 的体验； (2) 采用混合型 开发和完善 MyGoal 工具的方法，以识别有兴趣解决 UI 问题的 SB 患者 并建立他们的节制目标； (3) 在单一地点采用“前后”前瞻性研究设计 衡量 MyGoal 工具对 SDM 的影响、儿童对医患沟通的满意度、 以及他们的 HRQOL。本申请中提出的工作将通过改善 SB 患者产生重大影响 通过使用以患者为中心的工具进行护理。未来，我们预计会申请R03级别的资助 为成人开发 MyGoal 工具。我们还预计申请 R01 级资金来评估干预措施 在多个医疗保健系统中实现以患者为中心的 SB 目标并监测肾功能 前瞻性地，使用 K23 奖的患者队列。该应用程序将有助于提高我的专业知识 定性研究，包括设计思维方法、患者沟通和 SDM、患者报告 结果评估以及前沿的定量研究设计和分析。获得此奖项至关重要 对我的职业发展，因为它将为我提供进一步的实践研究经验和教学培训， 在以患者为中心的研究环境中，由经验丰富且鼓舞人心的导师组成的团队中。