Decentralization of Care for Adults with Congenital Heart Disease in the United States: A Geographic Analysis of Outpatient Surgery

BACKGROUND: Guidelines recommend that adults with congenital heart disease (CHD) undergo noncardiac surgery in regionalized centers of expertise, but no studies have assessed whether this occurs in the United States. We hypothesized that adults with CHD are less likely than children to receive care at specialized CHD centers. METHODS: Using a comprehensive state ambulatory surgical registry (California Ambulatory Surgery Database, 2005–2011), we calculated the proportion of adult and pediatric patients with CHD who had surgery at a CHD center, distance to the nearest CHD center, and distance to the facility where surgery was performed. RESULTS: Patients with CHD accounted for a larger proportion of the pediatric population (n = 11,254, 1.0%) than the adult population (n = 10,547, 0.07%). Only 2,741 (26.0%) adults with CHD had surgery in a CHD center compared to 6,403 (56.9%) children (p<0.0001). Adult CHD patients who had surgery at a non-specialty center (11.9±15.4 miles away) lived farther from the nearest CHD center (37.9±43.0 miles) than adult CHD patients who had surgery at a CHD center (23.2±28.4 miles; p<0.0001). Pediatric CHD patients who had surgery at a non-specialty center (18.0±20.7 miles away) lived farther from the nearest CHD center (35.7±45.2 miles) than pediatric CHD patients who had surgery at a CHD center (22.4±26.0 miles; p<0.0001). CONCLUSIONS: Unlike children with CHD, most adults with CHD (74%) do not have outpatient surgery at a CHD center. For both adults and children with CHD, greater distance from a CHD center is associated with having surgery at a non-specialty center. These results have significant public health implications in that they suggest a failing to achieve adequate regional access to specialized ACHD care. Further studies will be required to evaluate potential strategies to more reliably direct this vulnerable population to centers of expertise.