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

让家庭参与改善尿道下裂患者的护理 - Hypospadias COVID Extension。

• 批准号: 10435223
• 负责人: Katherine Hubert Chan
• 金额: $ 14.46万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-05-01 至 2023-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10435223
• 关键词: Address; Advocate; Attitude; Caring; Child; Child health care; Childhood; Clinical; Complex; Conflict (Psychology); Congenital Abnormality; Cosmetics; Decision Aid; Decision Making; Development; Ethics; Evaluation; Family; Future; Genital; Genitalia; Goals; Guidelines; Head; Health; Health Personnel; Hypospadias; Location; Longitudinal Studies; Male urethral structure; Measurement; Measures; Mentorship; Methodology; Operative Surgical Procedures; Outcome; Outcome Measure; Outcomes Research; Parents; Patient Care; Patient-Focused Outcomes; Patients; Postoperative Period; Procedures; Process; Provider; Psychometrics; Qualitative Research; Randomized Controlled Trials; Reconstructive Surgical Procedures; Regrets; Research; Research Design; Research Methodology; Research Personnel; Sampling; Science; Services; Site; Surgeon; Testing; Urology; Work; career; career development; coronavirus disease; evidence base; health care quality; improved; multidisciplinary; patient oriented; penis; prevent; repaired; satisfaction; shared decision making; skills; support tools; tool; urinary; urologic

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.

主张大多数催生儿童的重建手术，以防止潜在的严重化妆品 和功能问题。父母面临关于Hypospadias修复的决定 选择带来终生后果。最近的研究确定了决策冲突（DC）和 决策遗憾（DR）是父母的重大问题。关于复杂泌尿科的最近几项指南 主题表明共享决策（SDM）是最佳方法。因此，我建议改进 通过开发循证决策援助（DA），SDM和Hypospadias患者的护理。我的 假设是，开发的DA供与Hypospadias患者的父母一起使用，将促进SDM过程 从而减少DC和DR。此外，评估DR的研究表明，家庭变量，而不是 手术变量在催生后与DR最密切相关。因此，这是必须的 我们将评估从外科医生转变为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果指标，这强调了什么 对于患有催生的患者成熟和父母来说很重要。这项研究旨在（1）使用 以患者为中心的设计研究方法，以探索有关父母的决策制定方法 对父母的催生修复和重要性； （2）评估定性提供者对 SDM并使用DA用于催化性； （3）创建DA和术后结果测量工具 父母； （4）在临床环境中对DA进行试验测试，并对心理测量评估 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 具有帮助父母做出更明智的关于Hypospadias的知识的独立调查员 手术并客观地从患者/父母的角度衡量其长期结局。我还计划 将此方法应用于其他泌尿科生殖器程序。我希望对如何充分了解 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。我的职业发展目的是在此提案中解决的目的包括（a）开发 精通定性研究，包括以患者为中心的设计研究方法，（b）提高交付 通过开发和使用决策支持工具和患者/父母 - 集中的结果研究，以及（c）了解SDM研究的道德意义。我会完成的 这项工作在Aaron Carroll博士的指导下和具有健康专业知识的多学科团队的指导下 决策科学，小儿泌尿外科和定性研究。未来的计划包括一个多站点随机的 DA对Hypospadias决策的影响和对心理测量评估的对照试验 OMT在纵向研究中实施之前的较大样本中。

项目成果

Community engagement of adolescents in the development of a patient-centered outcome tool for adolescents with a history of hypospadias repair.

青少年的社区参与为有尿道下裂修复史的青少年开发以患者为中心的结果工具。

• DOI: 10.1016/j.jpurol.2019.04.011
• 发表时间: 2019
• 期刊: Journal of pediatric urology
• 影响因子: 2
• 作者: Chan,KH;Panoch,J;Carroll,A;Downs,S;Cain,MP;Frankel,R;Cockrum,B;Moore,C;Wiehe,S
• 通讯作者: Wiehe,S

Knowledge gaps and information seeking by parents about hypospadias.

• DOI: 10.1016/j.jpurol.2020.01.008
• 发表时间: 2020-04
• 期刊: Journal of pediatric urology
• 影响因子: 2
• 作者: Chan KH;Panoch J;Carroll A;Wiehe S;Cain MP;Frankel R
• 通讯作者: Frankel R