Text

Background: Bladder exstrophy (BE) is a rare and complex anomaly. The multidisciplinary management is demanding, with the schedulable corrective surgery being the most challenging endeavor. The complete care landscape has not been analyzed in Germany yet.

Methods: Cases with BE were analyzed 1) at the time of birth and 2) during the hospital stay for the corrective operation, based on national hospital discharge data (DRG statistics). Patient’s comorbidities, treatment characteristics, hospital structures, as well as the outcome of corrective operations were analyzed.

Results: From 2016-2023 161 newborns with BE at the time of birth in 105 hospitals respectively. At least one additional congenital anomaly was present in 34.2% of cases for BE and 3.7% of the newborns with BE had a birthweight below 1,500 grams.

198 corrective operations for BE were performed in 27 hospitals during the same time period with a median annual caseload of 1. Hospitals were divided into caseload terciles with a median of 1.3 and 8.5 corrective surgeries respectively in the low, medium and high volume tercile. Hospitals in the high caseload tercile performed delayed repair beyond 28 days of age for BE more commonly than hospitals with medium or low caseload (90% vs 34% vs 38.2%). The overall caseload differences were too low to perform a sufficiently powered volume- outcome analysis.

Conclusions: Newborns with BE are distributed across an extremely high number of hospitals at the time of birth. Some degree of centralization of care for corrective surgery can be noted, yet appears inadequate considering the complexity of corrective surgery and perioperative care. Treatment characteristics differed between high volume and low and middle volume hospitals. Considering the large number of hospitals with very low caseload, centralization of care for the complex and elective corrective surgery for BE remains a key issue for quality of care.

Note: Nimptsch and Promm share last authorship