T. Chkhikvadze1, C. J. Greig1, J. Shi2, R. A. Cowles1 1Yale University School Of Medicine,Section Of Pediatric Surgery, Department Of Surgery,New Haven, CT, USA 2Ohio State University,The Research Institute At Nationwide Children’s Hospital,Columbus, OH, USA
Introduction: Biliary atresia (BA) is a rare disease affecting infants and is the most common indication for pediatric liver transplantation in the United States. Due to the lack of an organized method for centralization of care for this disease, we hypothesized that care for BA patients would be distributed in a diffuse manner. The Kids’ Inpatient Database (KID) was analyzed to assess the distribution of care and hospital volume for BA in the United States.
Methods: The KID database, published triennially, was queried from 2000-2012 using the ICD-9-CM code for BA (751.61) and ICD-9 procedural codes for hepatic duct-GI anastomosis (51.37), and other bile duct anastomosis (51.39) in infants less than 1 year of age. National and regional estimates were calculated from captured discharges. We identified all hospitals caring for biliary atresia patients and subdivided into those providing overall care and those providing surgical care per year.
Results: The number of hospitals participating in KID increased over time as did the number of hospitals providing overall and surgical care for BA (Table). Operative caseload estimates from 2000 showed that 48 of 55 (87.3%) hospitals performed 1-2 cases/year and 7 of 55 (12.7%) performed 3-9 cases/year. Estimates from 2012 showed that 53 of 72 (73.6%) hospitals performed 1-2 cases/year and 19 of 72 (26.4%) performed 3-9 cases/year.
Conclusion: Infants with BA are cared for in 5-6% of hospitals reporting into the KID database. Surgical care appears to be further limited to approximately 2% of total KID participating hospitals. Although the care for BA appears to be self-centralized into only a very small subset of hospitals in the United States, nearly 75% of infants with this disease receive their surgical care in hospitals that perform fewer than three portoenterostomy procedures per year. Given the cost and long-term morbidity of BA treatment, a national cross-sectional study of care patterns and outcomes is desperately needed to assure that optimal care is being rendered under the current system.
