Organization and structure of intensive care management of adult congenital heart disease in the United States

Background The growing number of adults with congenital heart disease has led to the formation of dedicated centers to provide specialized care. There is a paucity of published data on the organization, staffing, and resources available when adult congenital heart disease (ACHD) patients are hospitalized in intensive care settings. This study aims to describe the delivery of intensive care for ACHD patients in the United States and identify key differences between accredited centers or those pending accreditation and non-accredited Adult Congenital Heart Association (ACHA) centers. Methods A web-based cross-sectional survey targeting centers with specialized ACHD programs was conducted. Results Data were obtained from 48 of 96 centers (50%). Twenty-seven (56%) were accredited by the ACHA and 8 (17%) were pending accreditation. Surgical ACHD patients were primarily co-managed by cardiologists and intensivists (n = 11, 23%) and treated within an adult cardiac surgical intensive care unit (n = 34, 72%). Compared to non-accredited centers, ACHA accredited centers or those pending accreditation were more likely to offer daily rounds with ACHD providers (30, 86% vs. 6, 46%, p=<0.01), were more likely to support an ACHD fellowship training program (16, 46% vs. 0, 0%, p=<0.01); and were more likely to have durable mechanical support, such as ventricular assist devices (35, 100% vs. 8, 62%, p < 0.01). Conclusion This survey reports current trends in organization, staffing, and resources available to ACHD patients requiring intensive care. ACHA accredited centers or those pending accreditation were more likely to have dedicated ACHD rounds, fellowship training programs, and access to durable mechanical support.