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09-02-2021 | Review

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

Auteurs: V. P. Bhatia, A. G. Mittal, P. F. Austin, M. E. Hilliard

Gepubliceerd in: Quality of Life Research | Uitgave 6/2021

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Abstract

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.
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Literatuur
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Metagegevens
Titel
The hypospadias-specific health-related quality of life conceptual framework: a scoping review of the literature
Auteurs
V. P. Bhatia
A. G. Mittal
P. F. Austin
M. E. Hilliard
Publicatiedatum
09-02-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 6/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-02773-w