Understanding health-related quality of life after hypospadias repair: A qualitative study with pre-adolescent males and parents.

ABSTRACT

INTRODUCTION: Hypospadias is a common disease that affects approximately 1 in every 200 live male births in the United States, and long-term studies of individuals who have undergone repair demonstrate complication rates of 15%-70%. The Hypospadias-Specific Health-related Quality of Life (HRQOL) Conceptual Framework for youth and adults suggests that additional morbidity may be incurred from poor psychological, social, and sexual health. The current study sought to clarify hypospadias-specific HRQOL and care priorities in a pre-pubertal population. MATERIAL AND METHODS: This IRB-approved, semi-structured interview study used rigorous qualitative research methods. Eligible patients were English-speaking 8-12-year-old males with hypospadias and their parents. Families completed a demographic questionnaire and separate youth and parent 30-min telephone interviews. We used hybrid thematic analysis to develop an operational codebook, analyze participant responses, and generate conceptual themes. Mixed methods analysis was used to explore patterns of experiences across groups defined by socioeconomic level. RESULTS: We interviewed 10 parents and 8 children (Median age 9 years, Range 8-11). We generated three overarching themes Penile Factors, Psychosocial Concerns, and Expectations of Surgery and the Healthcare Team. These highest-order themes were generated for youth, parent-proxy, and parent self-reported experiences, and there were different sub-themes for each participant type (Figure). Youth were focused on avoidance of disclosure and the psychological impact of self-comparisons and embarrassment, while the parental perspective centered on worries about future fertility, complications, psychological health, and normality. Some youth and parents from disadvantaged neighborhoods or those with public insurance indicated a need for more education on normal penile functions and provision of strategies for long-term self-monitoring and facilitation of long-term follow-up on mixed methods analysis. CONCLUSION: These findings add insight into the multifaceted experiences of pre-pubertal youth and families dealing with hypospadias, and underscore the consistent, wide-ranging interplay between medical, psychological, and social concerns. Patterns in themes across socioeconomic status and insurance coverage suggest that access to information and quality care may vary significantly and could contribute to health disparities. Urologists should employ an individualized approach to counseling and care delivery. Future studies will seek to characterize care priorities in pubertal and post-pubertal age groups to design developmentally adjusted support tools for youth and adults with hypospadias and their families.