# Engaging families to improve the care of patients with hypospadias.

> **NIH NIH K23** · INDIANA UNIVERSITY INDIANAPOLIS · 2020 · $175,220

## Abstract

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 ...

## Key facts

- **NIH application ID:** 9869889
- **Project number:** 5K23DK111987-04
- **Recipient organization:** INDIANA UNIVERSITY INDIANAPOLIS
- **Principal Investigator:** Katherine Hubert Chan
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $175,220
- **Award type:** 5
- **Project period:** 2017-05-01 → 2021-02-28

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9869889

## Citation

> US National Institutes of Health, RePORTER application 9869889, Engaging families to improve the care of patients with hypospadias. (5K23DK111987-04). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/9869889. Licensed CC0.

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