Advance Care Directives Among a Population-Based Sample of Young Adults with Congenital Heart Defects, CH STRONG, 2016–2019

Little is known about advance care planning among young adults with congenital heart defects (CHD). Congenital Heart Survey to Recognize Outcomes, Needs, and well-beinG (CH STRONG) participants were born with CHD between 1980 and 1997, identified using active, population-based birth defects surveillance systems in Arkansas, Arizona and Atlanta, and Georgia, and surveyed during 2016–2019. We estimated the percent having an advance care directive standardized to the site, year of birth, sex, maternal race, and CHD severity of the 9312 CH STRONG-eligible individuals. We calculated adjusted odds ratios (aOR) and 95% confidence intervals (CI) for characteristics associated with having advance care directives. Of 1541 respondents, 34.1% had severe CHD, 54.1% were female, and 69.6% were non-Hispanic white. After standardization, 7.3% had an advance care directive (range: 2.5% among non-Hispanic blacks to 17.4% among individuals with “poor” perceived health). Individuals with severe CHD (10.5%, aOR = 1.6, 95% CI: 1.1–2.3), with public insurance (13.1%, aOR = 1.7, 95% CI: 1.1–2.7), with non-cardiac congenital anomalies (11.1%, aOR = 1.9, 95% CI: 1.3–2.7), and who were hospitalized in the past year (13.3%, aOR = 1.8, 95% CI: 1.1–2.8) were more likely than their counterparts to have advance care directives. Individuals aged 19–24 years (6.6%, aOR = 0.4, 95% CI: 0.3–0.7) and 25–30 years (7.6%, aOR = 0.5, 95% CI: 0.3–0.8), compared to 31–38 years (14.3%), and non-Hispanic blacks (2.5%), compared to non-Hispanic whites (9.5%, aOR = 0.2, 95% CI: 0.1–0.6), were less likely to have advance care directives. Few young adults with CHD had advance care directives. Disparities in advance care planning may exist.