Abstract 9409: Risk Factors and Outcomes Associated With Loss of Follow-Up in Children With Congenital Heart Disease

Abstract

Introduction: Adults with congenital heart disease (CHD) benefit from cardiology follow-up. However, benefit for children is less clear as studies of follow-up patterns in children with CHD are limited. Hypothesis: There are identifiable risks for loss to cardiology follow-up in children with CHD, and loss to follow-up changes healthcare utilization and outcomes. Methods: Our cohort included children <10 years old with CHD and a healthcare encounter from 2008 to 2013 at one of four North Carolina hospitals. Using a Cox proportional hazards model, we assessed associations between demographics, presence of a severe lesion (conotruncal, endocardial cushion, and single ventricle lesions, aortic arch interruption, and total anomalous pulmonary venous return), and healthcare access, including educational isolation (EI) via geo-coded neighborhood of residence, and at least one cardiology follow-up visit within two years of initial encounter. We analyzed healthcare utilization by follow-up using a negative binomial landmark analysis. We described incidence of death and cardiac transplantation. Results: Of the 6,969 children, 24.8% were non-Hispanic Black and 14.1% were Hispanic. Overall, 60.4% received follow-up within 2 years, including 53.1%, 58.1%, and 79.0% of those with valve, shunt, and severe lesions respectively. Factors associated with loss to follow-up were increased drive time to the nearest cardiology clinic (Hazard Ratio 0.92 per 15-minute increase), EI (HR 0.94 per 0.2-unit increase), lower lesion severity (HR 0.48 for shunt/valve vs severe), and older age at initial encounter (HR 0.95 per month if <1 year old and 0.94 per year if >1 year old; p<0.05 ). Children lost to follow-up had more emergency department (ED) visits (Rate Ratio 1.59) and fewer inpatient encounters and procedures (RR 0.51, 0.35; p<0.05 ). Only 0.8% of children died or received a cardiac transplant after the 2-year landmark with no significant difference between follow-up groups. Conclusions: We found novel factors associated with loss to cardiology follow-up in children with CHD and worse utilization with loss to follow-up. Our findings demonstrate a need to mitigate healthcare barriers and generate clear cardiology follow-up guidelines for children.