Evolution of Health Concerns and Care Priorities in Hypospadias Patients: A Qualitative Study
Jacob Andrew Stevens, MD, Anjali Patel, BS, Jonathan Ellison, MD, Walid Farhat, MD, Vinaya Bhatia, MD.
University of Wisconsin - Madison, Madison, WI, USA.
Introduction: Hypospadias patients require life-long follow-up, with quality of life being a crucial component. We previously developed a framework for health-related quality of life (HRQOL) in hypospadias patients based on aggregate data from children, adolescents, and adults. These data have identified concerns voiced by pre-pubertal patients regarding penile appearance and function, psychosocial health, and healthcare team interactions. In this study, we sought to understand the evolution of health concerns and care priorities in hypospadias patients in pre-pubertal, pubertal, and post-pubertal settings. Methods: We conducted an IRB-approved, semi-structured interview study using rigorous qualitative research methods. Eligible candidates were English speaking males with hypospadias and their parents if they were under 18 years, or their romantic partners if they were older than 18 years. We utilized ICD 10 and CPT codes to identify potential participants and conducted interviews in a HIPAA-compliant environment. Participants underwent a 30-minute video interview performed by the primary investigator (VB). Interview questions were open-ended to encourage interviewees to discuss further concerns not previously recognized. Interviews were recorded, transcribed, and analyzed using an operational codebook to identify common health concerns and care priorities. Participants were categorized by age: 5-10 years (pre-pubertal), 11-15 years (pubertal), 16-20 years (post-pubertal), 21 and older (adults), and parents/partners. We identified common concepts to develop an operational codebook that described patient experiences. The initial coding (10 interviews) was performed by two blinded coders with comparison to ensure consistent coding. The codes were combined into one codebook after review by the senior author and the last 7 interviews were competed by a single coder. The final codebook was analyzed for common health concerns and care priorities.
Results: Fourteen out of 29 contacted families participated, and 17 interviews were conducted: 4 pre-pubertal patients, 2 pubertal patients, 0 post-pubertal patients, 5 adult patients, and 6 parents. Reasons for refusal included insufficient time (2 patients), discomfort with the subject matter (4 patients), or no response to messages (8 patients). Our analysis identified that care priorities evolved significantly over a lifetime, with post-pubertal patients demonstrating a wider array of concerns. Table 1 details demographic and lived experiences of surgery, while Table 2 presents care priorities stratified by age. Conclusions: Our preliminary analysis highlights that care priorities for hypospadias patients change over time, requiring a developmentally-adjusted approach to HRQOL assessment and follow-up. Future work will include assessments of additional post-pubertal patients and romantic partners of adults with hypospadias to broaden our understanding of patient experiences and needs. This information will assist in the development of support tools for life-long follow-up of hypospadias patients.
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