Skip to main content

BRIEF RESEARCH REPORT article

Front. Pediatr.
Sec. Pediatric Urology
Volume 12 - 2024 | doi: 10.3389/fped.2024.1445205
This article is part of the Research Topic Reviews in Pediatric Urology 2024 View all 9 articles

Call the Experts: Identifying Stakeholders in the Long-Term Care of Youth with Hypospadias

Provisionally accepted
VInaya P. Bhatia VInaya P. Bhatia 1*Kristin Ebert Kristin Ebert 1Shannon Cannon Shannon Cannon 1Walid Farhat Walid Farhat 1Heidi W. Brown Heidi W. Brown 2Jane E. Mahoney Jane E. Mahoney 1Marisa E. Hilliard Marisa E. Hilliard 3Kristina L. Penniston Kristina L. Penniston 1
  • 1 University of Wisconsin-Madison, Madison, United States
  • 2 Kaiser Permanente San Diego Medical Center, San Diego, California, United States
  • 3 Department of Pediatrics, Baylor College of Medicine, Houston, Texas, United States

The final, formatted version of the article will be published soon.

    Long-term follow-up for individuals with hypospadias remains a critical area of need, yet evidence-based guidelines for such follow-up are lacking, and the role for involvement of relevant experts is not yet established. Using our Hypospadias-specific Health-Related Quality of Life Conceptual Framework and a subsequent qualitative study of pre-pubertal males and parents of males with hypospadias, we had identified potential priorities for long-term follow up of youth with hypospadias. Using thematic codes from our patient and parent interviews, we searched PubMed for relevant articles and identified the specialties represented by all the authors of these articles. Our search strategy revealed consistent expertise across HRQOL themes and subthemes, including pediatric and adult urology, health psychology, psychiatry, endocrinology, genetics, and social work. Communication experts, as well as patients and families, were also represented in our literature search. Using these findings, we compiled a comprehensive list of potential stakeholders to inform the development of holistic care guidelines for individuals with hypospadias. By engaging these stakeholders, we aim to develop consensus-based, long-term follow-up guidelines and tools to address the evolving physical and psychosocial needs of people with hypospadias over a lifetime. Use of qualitatively-derived thematic codes to search for relevant literature is an accessible approach for identifying relevant stakeholders. These findings underscore the importance of involving diverse, multidisciplinary expertise to ensure comprehensive, patient-centered care in complex genitourinary conditions.

    Keywords: Hypospadias, Stakeholders, engagement, Holistic care, Adolescent & youth

    Received: 06 Jun 2024; Accepted: 07 Oct 2024.

    Copyright: © 2024 Bhatia, Ebert, Cannon, Farhat, Brown, Mahoney, Hilliard and Penniston. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: VInaya P. Bhatia, University of Wisconsin-Madison, Madison, United States

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.