1. Improving Longitudinal Outcomes, Efficiency, and Equity in the Care of Patients With Congenital Heart Disease
- Author
-
Khanh H. Nguyen, Steven A Kamenir, Stephen Cook, Kathleen E. Walsh-Spoonhower, Edward L. Hannan, Robert Vincent, Brett R. Anderson, Erin A Paul, John Billings, David B. Meyer, Joyce Woo, New York State Congenital Heart Surgery Collaborative for Longitudinal Outcomes, Jane W. Newburger, Sarah Crook, Neil Devejian, Michael F. Swartz, Kacie Dragan, George M. Alfieris, Ralph S. Mosca, Emile A Bacha, and Marshall L. Jacobs
- Subjects
Heart Defects, Congenital ,medicine.medical_specialty ,Adolescent ,Heart disease ,Social Determinants of Health ,medicine.medical_treatment ,New York ,Pharmacy ,Efficiency ,Severity of Illness Index ,Health Services Accessibility ,Insurance Claim Review ,Outpatients ,Match rate ,medicine ,Humans ,Longitudinal Studies ,Registries ,Social determinants of health ,Healthcare Disparities ,Child ,Rehabilitation ,Health Equity ,Medicaid ,business.industry ,Infant, Newborn ,Equity (finance) ,Infant ,medicine.disease ,United States ,Health equity ,Treatment Outcome ,Child, Preschool ,Family medicine ,Cardiology and Cardiovascular Medicine ,business ,Algorithms ,Follow-Up Studies - Abstract
Longitudinal follow-up, resource utilization, and health disparities are top congenital heart research and care priorities. Medicaid claims include longitudinal data on inpatient, outpatient, emergency, pharmacy, rehabilitation, home health utilization, and social determinants of health-including mother-infant pairs.The New York Congenital Heart Surgeons Collaborative for Longitudinal Outcomes and Utilization of Resources linked robust clinical details from locally held state and national registries from 10 of 11 New York congenital heart centers to Medicaid claims, building a novel, statewide mechanism for longitudinal assessment of outcomes, expenditures, and health inequities.The authors included all children 18 years of age undergoing cardiac surgery in The Society of Thoracic Surgeons Congenital Heart Surgery Database or the New York State Pediatric Congenital Cardiac Surgery Registry from 10 of 11 New York centers, 2006 to 2019. Data were linked via iterative, ranked deterministic matching on direct identifiers. Match rates were calculated and compared. Proportions of the linked cohort trackable over 3, 5, and 10 years were described.Of 14,097 registry cases, 59% (n = 8,322) reported Medicaid use. Of these, 7,414 were linked to New York claims, at an 89% match rate. Of matched cases, the authors tracked 79%, 74%, and 65% of children over 3, 5, and 10 years when requiring near-continuous Medicaid enrollment. Allowing more lenient enrollment criteria, the authors tracked 86%, 82%, and 76%, respectively. Mortality over this time was 7.7%, 8.4%, and 10.0%, respectively. Manual validation revealed ∼100% true matches.This establishes a novel statewide data resource for assessment of longitudinal outcome, health expenditure, and disparities for children with congenital heart disease.
- Published
- 2021
- Full Text
- View/download PDF