Engaging families to improve the care of patients with hypospadias.

提倡对大多数患有尿道下裂的儿童进行重建手术，以防止潜在的严重美容问题 和功能问题。面临尿道下裂修复决定的父母遇到了不可逆转的情况 具有潜在终生后果的选择。最近的研究发现决策冲突（DC）和 决策后悔（DR）是父母面临的一个重大问题。最近关于复杂泌尿外科的几项指南 主题表明共享决策（SDM）是最佳方法。因此我建议改进 通过开发基于证据的决策辅助 (DA)，SDM 和尿道下裂患者的护理。我的 假设为尿道下裂患者的父母开发的 DA 将促进 SDM 过程 从而降低 DC 和 DR。此外，评估 DR 的研究表明，家庭变量而不是 手术变量与尿道下裂手术后 DR 的相关性最强。如此看来，势在必行 我们将评估从以外科医生为中心转变为以患者为中心，以改善患者/家长的结果 满意。因此，我还建议确定以患者为中心的结果衡量标准，强调什么 对于尿道下裂患者及其父母来说很重要。本研究的目的是 (1) 利用 以患者为中心的设计研究方法来探索父母的决策过程 尿道下裂修复及其对父母重要的结果； (2) 定性评估提供者的态度 SDM 和使用 DA 治疗尿道下裂； (3) 创建DA和术后结果测量工具以供使用 由父母； (4) 在临床环境中对 DA 进行试点测试，并对 DA 进行心理测量评估 以患者为中心的术后结果测量工具。我的长期职业/研究目标是成为 独立调查员，有能力帮助父母就尿道下裂做出更明智的决定 手术并从患者/家长的角度客观地衡量其长期结果。另外我计划 将此方法应用于其他泌尿生殖器手术。我希望能够更全面地了解如何 我们可以有效地为父母提供最佳的决策支持，并使用以下方法评估我们的术后结果 以家长为中心的方法。本提案中提出的我的职业发展目标包括 (a) 熟练掌握定性研究，包括以患者为中心的设计研究方法，(b) 改进交付 通过开发和使用决策支持工具以及患者/家长来提供儿科泌尿科服务 以结果为中心的研究，以及 (c) 了解 SDM 研究的伦理影响。我会完成 这项工作是在亚伦·卡罗尔博士和具有健康专业知识的多学科团队的指导下进行的 决策科学、儿科泌尿学和定性研究。未来的计划包括多地点随机 DA 对尿道下裂决策影响的对照试验和心理测量评估 在纵向研究中实施之前，在较大样本中进行 OMT。

Reconstructive surgery is advocated for most children with hypospadias to prevent potentially serious cosmetic and functional problems. Parents faced with a decision about hypospadias repair encounter an irreversible choice with potentially lifelong consequences. Recent studies have identified decisional conflict (DC) and decisional regret (DR) as a significant problem for parents. Several recent guidelines on complex urologic topics suggest that shared decision-making (SDM) is the optimal approach. Therefore, I propose to improve SDM and the care of hypospadias patients by developing an evidence-based decision aid (DA). My hypothesis is that a DA developed for use with parents of hypospadias patients will facilitate the SDM process thereby decreasing DC and DR. Furthermore, studies assessing DR suggest that family variables, rather than surgical variables, are most strongly associated with DR after hypospadias surgery. As such, it is imperative that we shift our assessment from surgeon- to patient-centered outcomes to improve patient/parent satisfaction. Therefore, I also propose to identify patient-centered outcome measures, which emphasize what is important to patients with hypospadias as they mature and their parents. This study aims to (1) Utilize patient-centered design research methods to explore the parental decision making-process regarding hypospadias repair and outcomes of importance to parents; (2) Assess qualitatively providers' attitudes about SDM and use of a DA for hypospadias; (3) Create a DA and postoperative outcome measurement tool for use by parents; and (4) Conduct a pilot test of the DA in the clinical setting and a psychometric assessment of the patient-centered postoperative outcomes measurement tool. My long-term career/research goal is to become an independent investigator with the skills to help parents make more informed decisions about hypospadias surgery and objectively measure its long-term outcomes from a patient/parental perspective. Additionally I plan to apply this methodology to other urologic genital procedures. I hope to develop a fuller understanding of how we can effectively provide parents with optimal decision support and assess our postoperative outcomes using a parent-centered approach. My career development aims addressed in this proposal include (a) Developing proficiency in qualitative research, including patient-centered design research methods, (b) Improving delivery of pediatric urology services through the development and use of decision support tools and patient/parent- centered outcomes research, and (c) Understanding the ethical implications of SDM research. I will complete this work under the mentorship of Dr. Aaron Carroll and a multidisciplinary team with expertise in health decision sciences, pediatric urology and qualitative research. Future plans include a multi-site randomized controlled trial of the effects of DA on hypospadias decision-making and a psychometric assessment of the OMT in a larger sample prior to its implementation in longitudinal studies.