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.
Keywords: Advance care directive; Congenital heart defect; Congenital heart disease; Living will.
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