Where Adults with Congenital Heart Disease Die: Insights from the CDC-WONDER Database

The population of adults with congenital heart disease (ACHD) is rapidly increasing. There is limited understanding of location of death and associated disparities in these patients. From 2005-2018, a trend-level analysis was performed using death certificate data from the Centers for Disease Control and Prevention Wide-ranging Online Data for Epidemiologic Research Database, with individual-level mortality data obtained from National Center for Health Statistics. Places of death were classified as hospital, home, hospice facility, nursing home/long-term care and other. A total of 15,507 total deaths were identified in ACHD from 2005-2018 (54% Male, 84% White). ACHD patients were more likely to die in the hospital (64%) compared to general population (41%). Younger decedents (20-34) with ACHD were more likely to die in the hospital, while older decedents (≥65) were more likely to die at Hospice/Nursing facilities. Black and Hispanic patients with ACHD were more likely to die in the hospital compared to White and non-Hispanic patients. A significantly large proportion of ACHD deaths are observed in younger patients and occur in inpatient facilities. End-of-life planning among socially vulnerable populations should be prioritized.