Adults with congenital heart disease had high healthcare utilization over 3 years, including frequent ED use, yet fewer than half saw a cardiology specialist, with substantial geographic variation in cardiology visit rates ranging from 21% to 59%.
Nearly half of adults with CHD had at least one hospitalization over the 3-year study period.
More than one-third of adults with CHD had at least one emergency department visit over the 3-year study period.
The vast majority of adults with CHD had at least one outpatient encounter, but fewer than half saw a cardiology specialist.
There was marked geographic variation in cardiology visit rates across study sites.
Cardiac diagnostic and imaging procedures were common, occurring in more than two-thirds of the cohort.
Severe CHD was associated with higher odds of cardiac procedures but lower odds of ED use compared to non-severe CHD.
The study used a multi-site, population-based retrospective cohort design linking health and administrative records.
Age modified the associations between CHD severity and healthcare utilization outcomes.
This research examined how often adults with congenital heart disease (CHD) — heart defects present from birth — used different types of healthcare over a three-year period. The study followed nearly 19,000 adults aged 19 to 64 across five U.S. regions, looking at hospital stays, emergency room visits, regular outpatient visits, cardiology specialist visits, and various heart-related procedures. The data came from linked health and administrative records collected between 2011 and 2013. The study found that healthcare use among adults with CHD was very high overall: nearly half were hospitalized at least once, over a third visited an emergency department, and more than two-thirds underwent cardiac imaging or diagnostic procedures over just three years. Despite this heavy use of healthcare, fewer than half of these adults saw a heart specialist (cardiologist), and this gap was even larger among older adults. There was also striking variation by geography — the rate of cardiology visits ranged from just 21% in one region to 59% in another, suggesting that where a person lives has a major impact on whether they receive specialized heart care. This research suggests that many adults living with CHD — even those with serious forms of the condition — are not consistently receiving the specialized cardiac care that guidelines recommend for lifelong management of their condition. The frequent use of emergency departments may reflect gaps in routine specialized care. The large differences in cardiology visit rates across regions point to unequal access to CHD expertise across the United States, highlighting a need to improve how specialized care is delivered and accessed for this growing population of adults.
Crume T, Khanna A, Tillman A, Lui G, Soim A, Hsu D, et al.. (2026). Health Care Utilization in Adults With Congenital Heart Disease: Population-Based Findings.. Birth defects research. https://doi.org/10.1002/bdr2.70063