Demographics and baseline care among newly transitioning adult congenital urology patients.

Summary 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. Summary Table . New transitional urology clinic patients for whom studies or labs were warranted at time of presentation, and whether or not these were completed within 6 months of being ordered Patient follow through: labs and imaging studies Lab/Imaging Number of studies warranted at initial TU clinic visit Patients who completed study within 6 months N % n % Creatinine 25 86 22 88 Renal ultrasound 19 65 11 58 Urodynamic profile 18 62 11 61 Urine culture 3 10 9 81 KUB 11 38 3 100 CT abdomen/pelvis 2 7 2 100 Cystoscopy 5 17 4 80 Other 12 41 8 67 ∗excluding DSD patients. Other studies include MRI, Lasix renogram, scrotal ultrasound, and antegade nephrostogram.