The hypospadias-specific health-related quality of life conceptual framework: a scoping review of the literature

Purpose Health-related quality of life (HRQoL) is an important yet understudied construct for individuals with hypospadias (HS). An important barrier towards understanding HRQoL and integrating it into research and clinical care for people with HS is the absence of an underlying conceptual framework to illustrate this construct. We propose a conceptual framework for HS-specific HRQoL based upon a scoping review of the HS literature. Methods/Materials We conducted a literature review of articles published between 1989 and 2019. Our search in Embase and Pubmed used the keyword hypospadias in combination with quality of life and patient-reported outcomes. We used thematic analysis of the resulting publications to identify core HRQOL domains. From these results and review of HRQoL literature in other pediatric populations, we developed a conceptual framework representing HS-specific HRQoL. Results We identified five domains of HRQOL previously studied in research with youth and adults with HS: penile appearance, voiding, social interaction, sexual health, and psychological or behavioral function. We propose a model of HS-specific HRQoL comprised of these domains and their areas of overlap, based upon the findings and conceptual mapping of our literature review. Conclusion This novel conceptual framework provides a foundation for understanding disease-specific HRQoL in individuals with HS and may serve as a guide for the conduct of future qualitative studies of the HS population. The overlapping biopsychosocial domains illustrate the possible effects of HS on day-to-day life. This framework may guide future surgical, clinical, and behavioral interventions that aim to improve medical care and quality of life outcomes for HS patients.

Automated summary

The study identified five core domains of HRQoL in individuals with hypospadias and proposed a model based on these domains and their areas of overlap. This conceptual framework may guide future qualitative studies and interventions aimed at improving medical care and quality of life outcomes for HS patients.