Engaging families to improve the care of patients with hypospadias.

对于大多数尿道下裂的儿童，建议进行重建手术，以防止潜在的严重美容 和功能问题。父母面临决定尿道下裂修复遇到一个不可逆转的 可能会导致终身后果的选择。最近的研究已经确定了决策冲突（DC）， 决策后悔（DR）是父母的一个重要问题。复杂泌尿外科的几个最新指南 主题表明，共同决策（SDM）是最佳方法。因此，我建议改善 SDM和尿道下裂患者的护理，通过开发循证决策辅助（DA）。我 一种假设是，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术后DR的相关性最强。因此，当务之急是 我们将我们的评估从以外科医生为中心的结果转移到以患者为中心的结果，以改善患者/父母 满意因此，我还建议确定以患者为中心的结局指标，强调什么 对于尿道下裂患者及其父母来说，本研究旨在（1）利用 以病人为中心的设计研究方法，探讨父母的决策过程， 尿道下裂修复和结果对父母的重要性;（2）定性评估提供者对以下问题的态度： SDM和DA用于尿道下裂;（3）创建DA和术后结果测量工具以供使用 （4）在临床环境中对DA进行试点测试，并对 以患者为中心的术后结局测量工具。我的长期职业/研究目标是成为 一个独立的调查员的技能，以帮助家长作出更明智的决定尿道下裂 从患者/父母的角度客观地衡量其长期结果。此外，我计划 将该方法应用于其他泌尿生殖系统手术。我希望能更全面地了解 我们可以有效地为父母提供最佳决策支持，并使用 以父母为中心的方法我在本建议书中提出的职业发展目标包括：（a）发展 熟练掌握定性研究，包括以患者为中心的设计研究方法，（B）改善交付 通过开发和使用决策支持工具和患者/家长， 以结果为中心的研究，以及（c）理解SDM研究的伦理含义。我将完成 这项工作的指导下，博士亚伦卡罗尔和一个多学科小组的专业知识，在健康 决策科学、儿科泌尿学和定性研究。未来计划包括多中心随机 DA对尿道下裂决策影响的对照试验和 在纵向研究中实施OMT之前，在更大的样本中进行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.