Urologic provider experiences in transitioning spina bifida patients from pediatric to adult care

Purpose The lack of precedent in transitioning from pediatric to adult care poses a challenge to providers for patients with spina bifida (SB). The purpose of this study was to summarize perceptions about best practices for the care of adult spina bifida patients. Materials and methods A national survey was electronically distributed to 174 urologists who are current members of the Spina Bifida Association Network and AUA Working Group on Urologic Congenitalism. De-identified voluntary responses were assessed for implementation of and barriers to interdisciplinary adult SB clinics, continuity of care, and practices for transitioning from pediatric to adult care. Results The response rate was 40% with urologists practicing pediatrics, genitourinary reconstruction, female pelvic medicine and general urology. Patients undergoing transition or who have transitioned were seen in a multidisciplinary clinic (14%), regular adult clinic (34%), combined adult–pediatric multidisciplinary care (20%), or pediatric multidisciplinary clinic (28%). A majority believed transitioning to adult care should occur at 18 (24%) or 21 years (22%). In the absence of acute changes, providers followed adult SB patients annually with upper tract imaging (typically renal ultrasound) and serum creatinine. Acute urologic changes were preferentially managed with urodynamic testing and cystoscopy. Providers identified a need for multidisciplinary care in adult life, with neurosurgery/neurology (87%), social work (84%), and orthopedics (73%). Conclusions Potential solutions to improve the urologic care of this population suggest additional national provider resources, standardized guidelines, multidisciplinary collaboration, access to care, and an advanced-training pathway to improve care of adult patients with spina bifida.