Health Care Utilization in Adults With Congenital Heart Disease: Population‐Based Findings

BACKGROUND: Population-based data on healthcare utilization in adults with congenital heart disease (CHD) are limited. We examined utilization patterns in a multi-site, population-based U.S. cohort of adults with CHD. METHODS: This retrospective cohort linked health and administrative records from five regions (Colorado, North Carolina, Utah, metropolitan Atlanta, and New York). Adults aged 19-64 years with at least one CHD-related ICD-9-CM code recorded during 2011-2013 were included. We evaluated inpatient, emergency department (ED), outpatient, and cardiology outpatient encounters, as well as cardiac diagnostic/imaging, therapeutic/interventional, and vascular procedures. Multivariable mixed-effects logistic regression models compared utilization by CHD severity (severe vs. non-severe), adjusting for sex, race/ethnicity, insurance, comorbidity, and site, and including age group as an effect modifier. RESULTS: Over 3 years, this cohort of 18,877 adults (20.7% severe CHD), 45.9% had at least one hospitalization, 35.1% had an ED visit, 92.1% had an outpatient encounter, and 43.8% had a cardiology outpatient visit. Cardiac diagnostic/imaging procedures occurred in 67.8%, cardiac interventions in 20.3%, and vascular procedures in 10.5%. Severe CHD was associated with higher odds of cardiac procedures but lower odds of ED use than non-severe CHD. Age modified these associations, and site-level variation was marked, with cardiology visit rates ranging from 21% to 59%. CONCLUSIONS: Adults with CHD had high healthcare utilization, including frequent ED use, yet fewer than half saw a cardiology specialist, particularly at older ages. These findings highlight persistent gaps in lifelong care and substantial geographic variation, underscoring the need to improve access to specialized care for adults with CHD.