Among 1,746 patients with surgically repaired congenital heart disease (CHD) treated at a tertiary center from 2003–2020, 15.7% experienced true gaps in care (GIC)—defined as more than 3 years and 3 months beyond recommended follow-up intervals. Insurance instability and social vulnerability were the most common documented drivers. Of patients who eventually returned to care, 13% required cardiac intervention, and 26.7% of those interventions involved serious outcomes including stroke, infective endocarditis, urgent transplant referral, or death—across all anatomic complexity levels, including ostensibly simple CHD.
This finding reframes a persistent assumption in cardiology: that patients with simpler congenital defects can self-manage without systematic follow-up. The data suggests that structural social factors—not patient indifference or clinical stability—are the primary culprits behind care dropout. This aligns with a growing body of evidence linking social determinants of health to cardiovascular outcomes, but the granularity here is notable: manual chart review rescued nearly 36% of initially flagged patients from GIC misclassification, underscoring how electronic records alone mischaracterize care patterns.
Limitations include the single-center retrospective design serving just four states, limiting generalizability. The voluntary nature of return-to-care also introduces selection bias—the 58.5% who never returned remain a clinical unknown. As a preprint not yet peer-reviewed, these findings require independent validation before reshaping care protocols. That said, the case for proactive, socially-informed outreach models in CHD longitudinal care is compelling and overdue.
