Identifying The Experts in Care Planning for Hypospadias -Results of a Qualitative Interview Study
Vinaya Pavithra Bhatia, MD1, Shannon Cannon, MD1, Walid Farhat, MD, FRCSC, FACS1, Marisa Hilliard, PhD2.
1University of Wisconsin, Madison, WI, USA, 2Texas Children's Hospital at Baylor College of Medicine, Houston, TX, USA.
Background: We previously published a novel conceptual framework for health-related quality of life (HRQoL) for youth with hypospadias (HS) (Figure 1), with the goal to guide person-centered care for HS. Web-based care planning is one method to facilitate routine assessment of these complex concerns and has demonstrated high acceptability and feasibility in youth undergoing cancer treatment. In web-based care planning, youth or providers enter data in an application to generate a personalized care plan based on expert consensus and national guidelines. However, such consensus on care does not exist for HS. Therefore, development of a tool in HS will require identification of experts from whom to obtain consensus on approaches to follow-up. We interviewed youth and families of youth with HS to determine the face validity of our previous conceptual framework and identify which experts would be needed to develop care consensus guidelines to create a care-planning tool for HS.
Methods: We conducted an IRB-approved, rigorous qualitative study. Eligible patients were English-speaking 8-12-year-old males with HS and their parents. Following recruitment, parents reported demographic data, and parents and youth participated in separate 30-minute semi-structured telephone interviews. The interview format elicited youth self-reported experiences, parent-proxy reports of child experiences, and parent self-reported experiences. Interviews were audio recorded and transcribed. We used hybrid thematic analysis, in which we identified common concepts to develop an operational codebook that described patient experiences in HS. A second provider re-coded a sample of the interviews to confirm the fidelity of the codebook. Analysis of the coded transcripts identified themes of youth and parent HRQOL in HS. We then used these themes to identify potential stakeholders from whom to obtain expert consensus for care-planning in HS (Figure 1).
Results: Of 19 families contacted for recruitment, 10 (52.6%) consented to participate, with n= 10 parent interviews, 8 child interviews. Most (80%) youth were treated for distal HS, 20% proximal HS. The mean child age at repair was 4.14+3.65 years, while mean age at interview was 9.67+0.87 years. Eighty-nine codes were identified, 29 specific to youth HRQoL, 23 specific parent-proxy report of youth HRQoL, and 37 focused on parent HRQoL. In addition to themes from the HRQoL Conceptual Framework (Figure 1), we identified new themes, including Healthcare Team Interactions and Social Determinants of Health. The authors proposed experts to address each theme: pediatric urologists and nurses, youth with HS and families, adolescent medicine pediatricians, andrologists, social workers, health psychologists, and oncologists with care-planning expertise (Figure 1).
Conclusions: HS-specific HRQoL is complex, and our findings suggest that designing comprehensive care planning to support youth with HS will require several expert practitioners and community members with experience in HS to ensure that all relevant concerns are adequately addressed. This work will facilitate long-term support of youth with HS and increase collaboration between behavioral health specialists, urologists, and general practitioners caring for individuals with HS. 
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