Long term consequences of uncorrected hypospadias in children and young adults: a qualitative inquiry into patients' perspectives
Melise A. Keays, MD MSc FRCSC1, Viviane Grandpierre, PhD1, Daniel Keefe, MD FRCSC1, Sonia Guliati, PhD2, Anne Klassen, PhD3.
1CHEO, Ottawa, ON, Canada, 2Carleton University, Ottawa, ON, Canada, 3McMaster, Hamilton, ON, Canada.
Background: Some boys with distal hypospadias will not undergo surgical repair, either due to parental preference, or physician opinion that surgical intervention is unlikely to be necessary to have normal urinary and sexual function. The current knowledge of the long-term impact of uncorrected distal hypospadias remains based on experienced surgical opinion with very few studies in this regard. Given the paucity of patient centered data in this area, our aim was to explore patients' perspectives on the impact of a non-surgical approach to distal hypospadias Methods: This is a sub-study in a program of research which aims to develop a patient reported outcome measure for children and young adults with hypospadias. Utilizing an interpretive description approach, we conducted semi-structured interviews with 48 individuals with corrected and uncorrected hypospadias (parent-proxies, children, teens and adults). The sub-study included a total of six participants who were above the age of six were uncorrected (range: 6-22 years). Interviews were audio-recorded and transcribed verbatim. A constant comparative approach was utilized for analysis. Results: Participants in this sub-study provided between 12-47 codes regarding long term impacts of uncorrected hypospadias, for a combined total of 137 codes. Five themes emerged: Appearance and social were the most common themes (n=37 codes), followed by psychological function (n=30 codes), urinary function (n=28 codes), and sexual function (n=15 codes). Patients with urinary issues described urinary spray, prolonged voiding time, requiring to sit to void, downward spray, feeling awkaward in the bathroom, straining, or needing to pull the penis up to void were primary concerns. Social concerns included feeling that something was 'not right' or 'wrong' with their penis, feeling different than other boys/men, or feeling self-conscious. Older patients described some self-consciousness with sexuality, and some with discomfort with self-stimulation or sexual activity.
Conclusions. Patients with distal hypospadias who do not undergo surgical correction may develop long-term concerns that warrant a pediatric urology consultation. While some with distal hypospadias may not experience detrimental voiding or self-esteem issues, it may be prudent to consider longer-term urologic follow-up for patients who do not undergo hypospadias repair in childhood.
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