Gaps in Congenital Heart Disease Care: Social Drivers and Clinical Consequences

Background: Gaps in care (GIC) among patients with congenital heart disease (CHD) are associated with adverse outcomes, yet the specific social and healthcare-related factors contributing to GIC and the clinical consequences of delayed re-engagement in care remain poorly characterized. Large electronic medical record datasets often cannot distinguish true GIC from clinically appropriate care patterns or capture the patient-level factors contributing to GIC. Methods: We conducted a retrospective cohort study, combining large data with manual chart review, of 1,746 patients of all ages with surgically repaired CHD between 2003 and 2020 at a tertiary care center serving four states. GIC was defined as more than 3 years and 3 months between cardiology visits and exceeding the physician recommended follow-up interval. Results: Of the cohort, 916 patients (52%) met criteria for potential GIC. Following a structured manual chart review, a substantial subset was reclassified as having appropriate care, leaving 275 patients (15.7%) with true GIC. After multivariable adjustment, older age and simple anatomic CHD complexity were independently associated with GIC. Among patients with GIC, 17.8% had a documented contributor, most commonly insurance instability or social factors. Of those 41.5% returned to care (RTC), and many were asymptomatic but had significant disease progression. Thirteen percent of patients who RTC required cardiac intervention, including semi-urgent or urgent procedures, and 26.7% of those requiring intervention experienced significant morbidity or mortality, including stroke, infective endocarditis, urgent transplant referral, or death. These outcomes occurred across all levels of CHD complexity, including patients with simple CHD. Conclusions: GIC remain prevalent in patients with surgically repaired CHD and are associated with significant morbidity and mortality across the full spectrum of anatomic complexity. They are most often driven by insurance instability and social vulnerability rather than clinical factors, and many adverse outcomes may be preventable with consistent longitudinal care. These findings support a shift toward proactive care models that integrate standardized follow-up pathways, systematic assessment of patient-level needs, and emerging analytic tools to identify at-risk patients before GIC occur.