Racial and Ethnic Differences in Healthcare Access and Utilization Among Adults With Congenital Heart Defects in the Congenital Heart Survey to Recognize Outcomes, Needs and Well‐Being ( CH STRONG )

BACKGROUND: We assessed healthcare access and utilization among adults with congenital heart defects (ACHD) across racial and ethnic groups using a US population-based sample. METHODS: The cross-sectional CH STRONG was conducted from 2016 to 2019 among ACHD in Arkansas, Arizona, and Atlanta. Participants completed a self-administered questionnaire on their healthcare access, utilization, health status, comorbidities, and demographics. Differences in healthcare access and utilization among non-Hispanic White (NH-White), non-Hispanic Black (NH-Black), and Hispanic ACHD were assessed, and adjusted prevalence ratios (aPRs) and 95% confidence intervals (CI) reported. Health-related quality of life (HRQOL) was also compared with standardized norms for the general population from the Patient-Reported Outcomes Measurement Information System (PROMIS). Models were adjusted for age, sex, educational attainment, marital status, study site, and CHD severity. RESULTS: Of 1455 respondents, 76.7% were NH-White, 15.0% were NH-Black, and 8.9% were Hispanic. Compared to NH-White, NH-Black ACHD were less likely to have health insurance (aPR = 0.94; CI: 0.88-0.99) and more likely to report a prior gap in insurance coverage (aPR = 1.88; CI: 1.44-2.46). They were also less likely to have a usual place of care (aPR = 0.82; CI: 0.75-0.89) or any healthcare visits (aPR = 0.88; CI: 0.81-0.96) but more likely to have ≥ 1 emergency room visit (aPR = 1.66; CI: 1.38-2.00) and hospitalization (aPR = 1.96; CI: 1.40-2.74) in the past year. Hispanic ACHD were more likely than NH-White to report a prior gap in insurance coverage (aPR = 1.78; CI: 1.19-2.65). CH STRONG ACHD did not differ from the general population on global mental-health and physical-health scores. CONCLUSIONS: Racial and ethnic differences in healthcare access and utilization exist among a population-based group of ACHD. Strategies for improvement in access to quality care may help reduce differences.