Engaging families to improve the care of patients with hypospadias - Hypospadias COVID Extension.

对于大多数患有尿道下裂的儿童，提倡进行整形手术，以防止潜在的严重整容。 和功能问题。面临尿道下裂修补术决定的父母遭遇不可逆转 可能产生终生后果的选择。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。关于复杂泌尿外科的几个最新指南 主题表明，共享决策(SDM)是最佳方法。因此，我建议改进 SDM和通过开发循证决策辅助(DA)来护理尿道下裂患者。我的 假说是，为尿道下裂患者的父母开发的DA将促进SDM过程 因此减少了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/父母 满足感。因此，我还建议确定以患者为中心的结果衡量标准，这些标准强调什么 对于发育成熟的尿道下裂患者和他们的父母来说很重要。本研究旨在(1)利用 以患者为中心探索父母决策过程的研究方法 对父母重要的尿道下裂修复术和结果；(2)定性评估提供者对 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)在临床环境中对伤残儿童进行试点测试，并对儿童进行心理测量评估 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 一名独立调查员，具有帮助父母更明智地做出有关尿道下裂的决定的技能 并从患者/父母的角度客观地衡量手术的长期结果。另外，我计划 将这一方法应用于其他泌尿生殖系统手术。我希望能更全面地理解如何 我们可以有效地为父母提供最优的决策支持，并使用 以家长为中心的方法。我的职业发展目标包括：(A)发展 精通定性研究，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和患者/家长- 以结果研究为中心，以及(C)理解可持续发展管理研究的伦理影响。我会完成的 这项工作是在亚伦·卡罗尔博士和一个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学评估 在纵向研究中实施OMT之前，在更大的样本中进行。

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.