Demographics and baseline care among newly transitioning adult congenital urology patients

Introduction: In 2017, UCSF established a formal Transitional Urology (TU) clinic co-run by pediatric and adult urology aimed at providing comprehensive urologic care for people progressing into adulthood with complex urologic histories.

Objective: We aim to describe baseline demographic and disease characteristics of this population, understand gaps in care, and gauge follow-through.

Study design: We performed a retrospective chart review of all new patients in the TU clinic at UCSF from February 2017 through January 2019. After approval from an institutional review board, demographic and clinical data were collected from medical records.

Results: 39 new patients were seen in UCSF's TU clinic during a 23-month period. Our cohort included 20 patients with spina bifida and neurogenic bladder, 5 with bladder exstrophy, 3 with disorders of sexual development (DSD), 5 with obstructive uropathy, 2 with cloacal anomalies, and 1 patient each with calcinuria, reflux nephropathy, prune belly syndrome, and urachal cyst. Mean age of patients was 26 years, 63% were male, 88% spoke English, and 70% had public insurance. Patients lived an average of 94 miles from the clinic and had a mean zipcode-based household income of $70,110. There was an average of 19 months between the initial TU visit and the most recent prior urology visit. The median time since last creatinine as well as last renal ultrasound was 9 months. 19 (54%) patients warranted a total of 28 referrals to other providers at their initial visit, and 42% of these were obtained within 6 months.

Discussion: According to our demographic data, TU patients are likely to have public insurance, live far from the TU clinic, and come from low SES backgrounds. At initial presentation over half of patients warranted updated tests like creatinine and renal ultrasound. Furthermore, nearly two-thirds of patients required at least one referral to a different provider, suggesting a majority of these patients had unmet medical needs at the time of presentation to the TU clinic.

Conclusion: Our data indicate that new patients to the TU clinic often warrant additional workup, updated testing, and referrals to sub-specialty care as these needs are often unmet at the time of presentation. The etiology of this is unclear and it may be due to insurance difficulties, inability to identify an appropriate adult subspecialty provider or access to care issues. Further investigation into barriers to implementation of transitional care is needed to provide comprehensive management to this challenging patient population.

Keywords: Congenitalism; Spina bifida; Transitional urology.