Trends in Gaps of Care for Congenital Heart Disease Patients: Implications for Social Determinants of Health and Child Opportunity Index

Background Lifelong continuity of care is imperative for patients with congenital heart disease (CHD); unfortunately, gaps in care (GIC) are common. Methods All patients aged 0-34 years followed at a pediatric subspecialty hospital (primary location Delaware; satellites covering Pennsylvania, New Jersey, Maryland) with CHD who underwent surgery between January 2003 and May 2020 were included. Patients were categorized as simple, moderate, and complex CHD based on 2018 American Heart Association and American College of Cardiology guidelines. Social determinants of health factors such as age, race, ethnicity, sex, language, insurance status, and Child Opportunity Index based on home address zip code were analyzed. Results Of 2012 CHD patients, a GIC of ≥3 years was identified in 56% (n=1119). The proportion of patients with GIC per year increased for all patients. Multivariable longitudinal models with all CHD patients showed that GIC are increasing for patients who are ≥10.5 years old, have simple CHD, live out of state, live farther from a site of care (hospital or satellite clinics), receive public insurance and/or have less protection with additional insurance plans, and reside in low Child Opportunity Index neighborhoods. A separate model for only moderate/complex CHD patients showed similar findings. Neither longitudinal model showed race/ethnicity as significant for increasing GIC trends. Conclusions GIC have continued to increase with an aging CHD population with social determinants of health factors specifically related to insurance, access, and neighborhood opportunity. Attenuating GIC necessitates standardized practices while simultaneously addressing the impact of SDOH on all CHD patients. What is new? What Are the Clinical Implications? ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement No external funding was received in support of this work. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: This study was approved by the Nemours Institutional Review Board. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data, analytic methods, and study materials will be available to other researchers for data analysis to reproduce the results or replicate the procedure upon request. This data will be deidentified, and no personal health information will be shared.