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: 10599348
• 负责人: Konrad Szymanski
• 金额: $ 16.68万
• 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 2025-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10599348
• 关键词: Address; Adolescent; Adult; Articulation; Award; Caregivers; Caring; Cellular Phone; Central Nervous System; Child; Child Care; Clinic; Clinical; 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; Learning; Measures; Medical; Mentored Patient-Oriented Research Career Development Award; Mentors; Methods; Monitor; Outcome; Patient Care; Patient Outcomes Assessments; Patient Selection; 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 determinants; health goals; health related quality of life; improved; individual patient; innovation; interest; patient engagement; 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），需要终身泌尿外科护理。 卫生专业人员认为，通过内科或外科治疗实现的治愈， 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导致多系统残疾，UI可能不是唯一的，甚至是主要的， SB患者HRQOL的决定因素。为了响应个人的偏好和需求，临床医生必须 关注患者在几个维度上的个人健康目标（例如，症状;身体和社会 功能），并确定如何满足它们。仅通过识别对UI治疗感兴趣的患者，以及 帮助他们确定他们的治疗目标，我们将能够确定改善UI是否会增加HRQOL。我 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 与以患者为中心的目标和循证实践脱节。我的短期目标是开发一种工具 （MyGoal），以改善我们如何处理SB患者的UI决策。这一工具有许多优点， 包括通过帮助患者阐明对他们重要的事情来简化决策， 讨论，并将治疗方法与这些目标相结合。最后，这种方法应该允许有效的共享 通过让患者选择最高优先级的健康结果，并由临床医生确定 治疗最有可能实现这些目标。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好的SDM，对患者-提供者沟通的满意度，以及 HRQOL。因此，该职业发展奖的具体目标是：（1）让儿童参与SB， 更好地了解他们在其他竞争性护理问题的背景下对UI的经验;（2）采用混合- 开发和完善MyGoal工具的方法，以识别对解决UI感兴趣的SB患者 并建立他们的可持续发展目标;（3）在一个单一的研究中心采用“前后”前瞻性研究设计， 测量MyGoal工具对SDM的影响，儿童对患者-提供者沟通的满意度， 和他们的HRQOL。本申请中提出的工作将通过改善SB患者 通过使用以患者为中心的工具进行护理。未来，我们预计将申请R 03级资金， 为成年人开发MyGoal工具。我们还预计将申请R 01级资金，以评估干预措施 在多个医疗保健系统中以患者为中心的SB目标为目标，并监测肾功能 前瞻性地，使用来自K23奖的患者队列。这个应用程序将有助于提高我的专业知识 在定性研究中，包括设计思维方法、患者沟通和SDM，患者报告 结果评估以及尖端的定量研究设计和分析。获得这个奖项是必不可少的 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， 在一个以病人为中心的研究环境中，在一个经验丰富和令人鼓舞的导师团队中。