BACKGROUND: Long-term care guidelines and condition-specific measures for annual surveillance following hypospadias repair are lacking. Additionally, there is limited data on the differences between patient and provider (physicians, psychologists, advance practice providers [APPs]) priorities for long-term follow-up care. This study aims to understand these differences using rigorous, evidence-based techniques to establish expert consensus.
METHODS: We conducted an IRB-approved modified Delphi Survey including stakeholders in the care of hypospadias, including pediatric providers, pediatric urologists, psychologists, endocrinologists, adolescent and adult patients, and parents of patients with hypospadias. All members were recruited in a previous qualitative needs assessment for care planning in hypospadias. The survey asked patient and parent participants to complete a demographic form and health literacy screening, and then to evaluate the importance of health screening questions for a proposed annual surveillance questionnaire. The survey was then administered online over video conferencing platform by a research coordinator, who was available to answer respondent questions. Health care professionals were asked about their subspeciality and years of experience in medicine, and completed the survey online. Items within the survey were drafted from qualitative interview responses from a previous study about care priorities for youth, parents of youth, and adults with hypospadias. Responses were compared between health care providers and youth, parents, and adults with hypospadias. A threshold of 75% of participants stating that they “Agreed” or “Strongly Agreed” with the proposed screening statement was considered sufficient for inclusion of the statement.
RESULTS: A total of 14 providers (3 pediatric urology physicians, 3 pediatric urology APPs, 3 psychologists, 4 endocrinologists, 1 pediatric APP) and 7 families (5 youth, 5 parents, 2 adults) completed the First-Round Survey. Patient demographics are detailed in Table 1. Of 65 potential items presented, 13 statements met high agreement among all patient and parent experts, and 48 statements met high agreement among healthcare experts. Of the 13 statements meeting high agreement from the patient and parent perspective, only two statements did not achieve high agreement among providers, specifically related to disrupted daily schedules from urinary symptoms, and worry associated with urination (Table 2). Providers tended to give higher importance ratings on items related to items focused on penile appearance and body image, teasing or embarrassment, sexual health impacts, and doctor-patient communication.
CONCLUSIONS: When considering high priority areas for annual screening after hypospadias repair, patients and parents emphasize close monitoring of urinary function impacts, potential need for future surgeries, and ensuring available support for families undergoing treatment. A subsequent annual screening measure for hypospadias should reflect these concerns to ensure comprehensive care.