Miriam Wilms, Anna Ebert, Raimund Stein, Wolfgang Rösch, Heiko Reutter, Reinhard Busse, Patricia Reis Wolfertstetter, Maria Korte, Ekkehart Jenetzky, Ulrike Nimptsch, Martin Promm
Care for patients with BE in Germany is highly decentralized. Differences in treatment strategies between higher- and lower-volume centers suggest potential variability in care delivery. Centralization of corrective BE surgery may support greater standardization of treatment.
INTRODUCTION: Classic bladder exstrophy (BE) is a rare and complex congenital anomaly requiring highly specialized multidisciplinary care. Although corrective surgery represents the central component of treatment, the national care structure for patients with BE in Germany has yet not been comprehensively evaluated.
METHODS: Nationwide hospital discharge data (Diagnosis-Related Group statistics) from 2016 to 2024 were analyzed to identify patients with BE at (1) birth hospitalization and (2) hospitalization for corrective surgery. Patient characteristics, associated anomalies, treatment patterns, hospital caseload, and perioperative outcomes were assessed.
RESULTS: Between 2016 and 2024, 177 newborns with BE were treated across 120 hospitals at the time of birth. At least one additional congenital anomaly was documented in 34.5% of patients, and 4.0% had a birthweight below 1,500 g. During the same period, 221 corrective procedures were performed in 34 hospitals, with a median annual caseload of one case per institution. Hospitals were stratified into caseload terciles with median annual volumes of 1, 3, and 8 procedures in the low-, medium-, and high-volume groups, respectively. Delayed primary closure beyond 28 days of life was performed more frequently in high-volume centers compared with medium- and low-volume hospitals (85.1% vs. 40.7% vs. 39.3%). Institutional caseloads were insufficient to support a statistically robust volume-outcome analysis regarding early postoperative complications.
CONCLUSIONS: Care for patients with BE in Germany is highly decentralized. Differences in treatment strategies between higher- and lower-volume centers suggest potential variability in care delivery. Centralization of corrective BE surgery may support greater standardization of treatment.