O3341: Highlighting Barriers to Research in Pediatric Urology- Difficulty Studying Long Term Outcomes of Hypospadias

Background: Urologic conditions represent the second most common anomalies diagnosed in newborns after cardiac defects. Hypospadias remains one of the most prevalent urologic conditions, affecting up to 1 in 150 male newborns. Patients who underwent hypospadias repair in childhood have known long term effects on urinary, sexual, and psychological health. Despite this, studying outcomes of urologic procedures remains difficult. We aimed to better understand and quantify this observation based on experience at our Institution.

Methods: Men over the age of 18 with a history of prior hypospadias repair from 1990-2006 were identified. Participants were contacted by phone and asked to participate in the study if over the age of 18 and hypospadias disclosure could be inferred from chart review. If disclosure was not apparent, the parent/guardian of the patient was first called to confirm that the patient was aware of their diagnosis in hopes of avoiding accidental disclosure. We collected demographic information, parental disclosure, age of disclosure (if known), surgical data, complication data, and self-reported outcomes based on AUA symptom score, Penile perception Score (PPS), and Hypospadias Objective Score Evaluation (HOSE) as well as an institutionally developed survey to assess chordee, erections (Erectile Hardness Score and International Index of Erectile Function (IIEF)), self-image, urinary stream, and decisional regret.

Results: A total of 540 patients have been attempted to be contacted. 164 (30%) phone numbers were disconnected. 31 (6%) did not answer despite 3 attempts to contact. Of the 238 (44%) who were able to be reached, 128 (53.4%) were not interested in participating. 146 (61%) parents commented on disclosure- 134 (92%) disclosed hypospadias surgery to their child. 12 (8%) did not disclose or were unsure. 87 of 238 (37%) were successfully contacted and agreed to fill out the surveys. Of which, 77 (89%) completed surveys.

Conclusion: Based on our experience, studies involving long term surgical outcomes in patients with childhood surgery are challenging. It is important to be aware of several barriers in conducting these studies such as limited access to updated contact information, poor response rate, and necessity for dedicated research personnel.