ACHD Mortality Displays Correlation With Lower Household Income, Lack of Insurance

Patients with lower household income and without insurance have higher overall rates of mortality and disability with adult congenital heart disease (ACHD), according to recent research.1

This study, which utilized data from the Global Burden of Disease (GBD) Study, is among the first to seek a connection between the health and survival of patients with ACHD and the income and insurance data from the US Census. Investigators primarily focused on income levels, disability, and death rates for these patients.2

“Understanding how social and economic factors can influence survival and outcomes is essential. Long-term outcomes and quality of life depend heavily on access to specialized, lifelong care for people with congenital heart disease,” Anitha John, MD, PhD, medical director of the Washington Adult Congenital Heart Program at Children’s National and investigator on the study, said in a statement. “Seeing how these factors affect patients long term allows us to better identify people at highest risk for complications.”2

For the study, John and colleagues defined ACHD by 3 main factors: an age of ≥20 years, the presence of CHD as defined by the 2018 American Heart Association/American College of Cardiology guidelines, and residence in the US. Mortality was estimated via the Cause of Death Ensemble model, a tool developed specifically for GBD that runs multiple models to analyze the predictive validity of different statistical models and combines them to provide cause-specific estimates of mortality.1

The team utilized the covariates of total congenital birth defects and congenital heart disease in the Cause of Death Ensemble models. Years of life lost (YLLs) were calculated by taking the difference between the longest possible life expectancy for a patient of a given age and the age of death. Mortality estimates were reported as age- and sex-specific mortality rates per 100,000 population, while prevalence estimates represented the total number of patients with ACHD within each age-sex group at the national level.1

John and colleagues found that, in 2021, 292,624 adults ≥20 years with CHD were identified through the GBD, compared to 212,366 adults in 1990. However, the number of deaths was lower in 2021, with 1073.62 deaths (95% CI, 963.55-1330.65) versus 1424.79 (95% CI, 1243.97-1498.5) in 1990.1

In 2021, state median household income in the US ranged from $51,122 to $91,072; West Virginia, which had the highest ACHD mortality rate, also featured 1 of the lowest median household incomes ($51,122; 90% CI, $50,059-$52,185). Washington, DC, had the lowest mortality rate and featured the highest median income at $91,072 (90% CI, $88,170-$93,974).1

The team found a statistically significant inverse correlation between ACHD mortality and median income, while a weaker but still significant correlation was found between mortality and the percentage of uninsured residents in a given state. While not unique to ACHD, these correlations are substantially stronger than those for stroke and ischemic heart disease in 2021. However, ACHD prevalence also demonstrated a weaker association with socioeconomic indicators, with a relatively weak direct association between prevalence and median household income.1

“Future modeling that allows for analysis of ACHD subtypes will provide better understanding of disease prevalence in the US,” John and colleagues wrote. “Additional analysis on outcomes and proximity to ACHD specialty centers can continue to inform policy and workforce needs and improve access to care.”1

References

1. Kumar VS, Kassebaum N, Schwartz B, et al. Associations between socioeconomic status and adult congenital heart disease mortality in the United States: Insights from the global burden of disease study. Journal of the American Heart Association. Published online July 15, 2026. doi:10.1161/jaha.125.046919

2. American Heart Association. Are survival rates for adults with congenital heart disease linked to specialized cardiac care access? Eurekalert! July 15, 2026. Accessed July 16, 2026. https://www.eurekalert.org/news-releases/1135695