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Mortality risk in adults with congenital heart disease (ACHD) extends beyond disease complexity to include social determinants of health (SDOH). A single-center retrospective cohort study published in the Journal of the American Heart Association evaluated clinical and social factors associated with all-cause mortality in ACHD. The analysis included 6134 patients with ACHD from the Mayo ACHD Registry with a verifiable residential address between January 1, 2004, and December 31, 2023. 

Clinical characteristics and SDOH indicators were assessed, including insurance type, primary language, rural-urban commuting area (RUCA) classification, and a housing-based socioeconomic index derived from four objective housing characteristics and categorized into quartiles (Q1-Q4). Cox proportional-hazards models were used, incorporating congenital heart disease (CHD) severity, arrhythmias, comorbidities, and SDOH indicators, with county of residence included as a random effect.

The mean age was 38±16 years, 51% were male, 78.7% were White, and 44.9% resided in rural areas. Independent predictors of mortality included cyanotic CHD (adjusted hazard ratio [aHR] 5.70; 95% confidence interval [CI] 2.90-11.23), Fontan palliation (aHR 4.98; 95% CI 2.56-9.70), ventricular tachycardia (aHR 1.71; 95% CI 1.16-2.52), older age at first visit (aHR 1.05 per year; 95% CI 1.04–1.05), male sex (aHR 1.19; 95% CI 1.03-1.39), public insurance (aHR 1.60; 95% CI 1.35-1.90), rural residence (aHR 1.25; 95% CI 1.06-1.47), and non-English language (aHR 1.75; 95% CI 1.38-2.23). The housing-based socioeconomic index was not associated with mortality. Model discrimination was acceptable (concordance statistic 0.77).

Clinical and SDOH factors were associated with mortality in ACHD, highlighting the role of non-clinical variables in risk stratification.
 

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Key highlights
  • In 6134 patients with ACHD, clinical and social factors were associated with all-cause mortality
  • Cyanotic CHD (aHR 5.70) and Fontan palliation (aHR 4.98) showed the highest mortality associations
  • Public insurance (aHR 1.60), rural residence (aHR 1.25), and non-English language (aHR 1.75) were associated with higher mortality
  • The housing-based socioeconomic index was not associated with mortality; model concordance was 0.77
Source

O'Sullivan D, Samimi S, Anjewierdan S, et al. Sociodemographic and Clinical Predictors of Mortality in Adults With Congenital Heart Disease. J Am Heart Assoc. Published online March 25, 2026. doi:10.1161/JAHA.125.045411

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A retrospective cohort in ACHD examined clinical and social determinants of mortality.

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