Mp50-10 Ask the Patients: Development of an Adolescent and Young Adult Patient-Reported Outcomes Measure for Hypospadias Care

You have accessJournal of UrologyPediatrics III (MP50)1 May 2024MP50-10 ASK THE PATIENTS: DEVELOPMENT OF AN ADOLESCENT AND YOUNG ADULT PATIENT-REPORTED OUTCOMES MEASURE FOR HYPOSPADIAS CARE Charlene Brown, Kristen Larson, Brandon Cockrum, Bridget Hawryluk, Courtney M. Moore, Sarah Wiehe, and Katherine Chan Charlene BrownCharlene Brown , Kristen LarsonKristen Larson , Brandon CockrumBrandon Cockrum , Bridget HawrylukBridget Hawryluk , Courtney M. MooreCourtney M. Moore , Sarah WieheSarah Wiehe , and Katherine ChanKatherine Chan View All Author Informationhttps://doi.org/10.1097/01.JU.0001008684.57262.97.10AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Patient-reported outcome measures (PROMs) for hypospadias care are lacking and most existing instruments were developed without patient input. The objective of this study was to 1) use our previously developed Hypospadias Journal for concept elicitation in a sample of adolescent and young adult hypospadias patients and 2) develop a new hypospadias PROM. METHODS: We recruited English-speaking males ages 13-30 living in the United States with a self-reported history of hypospadias through advertisements on Facebook and Instagram from March-June 2022. Using a Qualtrics screening survey, ineligible respondents were identified using automated fraud detection and manual review. Consenting participants were sent an electronic Hypospadias Journal containing generative activities that utilized creative writing exercises and multiple-choice scales. Demographics were summarized using descriptive statistics. Human-centered design researchers synthesized the journals' key themes to create 1) an affinity diagram with hypospadias-related quality-of-life (QOL) domains, and 2) draft items for the PROM covering each domain. Journal participants were asked to complete a survey to a) rank domains and draft items for the PROM, and b) explore preferences for item phrasing. In a focus group, a urologist and a hypospadias patient reviewed and revised draft PROM items, which informed the final PROM. RESULTS: Of the 20 eligible participants based on completed screening surveys (N=411), 391 were ineligible, 12 completed journals: 8 adults; 4 adolescents (11 surgical/1 non-surgical): 66.7% White, 8.3% Black, 16.7% Asian, 8.3% >1 race. 41.7% were distal, 41.7% proximal, 16.7% had unknown/missing meatal location. We identified four hypospadias related QOL domains and 13 respective sub-domains (Figure 1) and a PROM was created, covering all QOL domains (Table 1). CONCLUSIONS: Our study provides a hypospadias PROM that is ready for psychometric assessment in a larger sample. Download PPT Source of Funding: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases: 3K23DK111987-04S1 © 2024 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 211Issue 5SMay 2024Page: e834 Advertisement Copyright & Permissions© 2024 by American Urological Association Education and Research, Inc.Metrics Author Information Charlene Brown More articles by this author Kristen Larson More articles by this author Brandon Cockrum More articles by this author Bridget Hawryluk More articles by this author Courtney M. Moore More articles by this author Sarah Wiehe More articles by this author Katherine Chan More articles by this author Expand All Advertisement PDF downloadLoading ...