Engaging families to improve the care of patients with hypospadias

大多数尿道下裂患儿都主张进行重建手术，以防止潜在的严重美容

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.