Brett R Anderson1, Kacie Dragan2, Sarah Crook3, Joyce L Woo4, Stephen Cook5, Edward L Hannan6, Jane W Newburger7, Marshall Jacobs8, Emile A Bacha9, Robert Vincent10, Khanh Nguyen11, Kathleen Walsh-Spoonhower12, Ralph Mosca13, Neil Devejian14, Steven A Kamenir15, George M Alfieris16, Michael F Swartz17, David Meyer18, Erin A Paul19, John Billings2. 1. Division of Pediatric Cardiology, NewYork-Presbyterian/Columbia University Irving Medical Center, New York, New York, USA. Electronic address: bra2113@cumc.columbia.edu. 2. Wagner Graduate School of Public Service, New York University, New York, New York, USA. 3. Division of Pediatric Cardiology, NewYork-Presbyterian/Columbia University Irving Medical Center, New York, New York, USA. 4. Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, USA. 5. Offices of Health Insurance Programs, New York State Department of Health, Albany, New York, USA. 6. School of Public Health, University at Albany, State University of New York, Rensselaer, New York, USA. 7. Department of Pediatric Cardiology, Boston Children's Hospital, Boston, Massachusetts, USA. 8. Division of Cardiac Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA. 9. Department of Cardiothoracic Surgery, NewYork-Presbyterian/Columbia University Irving Medical Center and Weill Cornell Medical Center, New York, New York, USA. 10. Division of Pediatric Cardiology, Westchester Medical Center, Valhalla, New York, USA. 11. Department of Cardiac Surgery, Westchester Medical Center, Valhalla, New York, USA. 12. Division of Pediatric Cardiology, Stony Brook Children's Hospital, Stony Brook, New York, USA. 13. Department of Cardiothoracic Surgery, New York University, New York, New York, USA. 14. Division of Pediatric Cardiothoracic Surgery, Albany Medical College, Albany, New York, USA. 15. Division of Pediatric Cardiology, Albany Medical College, Albany, New York, USA. 16. Division of Cardiac Surgery, University of Rochester Medical Center, Rochester, New York, USA; Department of Surgery, State University of New York Upstate Medical Center, Syracuse, New York, USA. 17. Division of Cardiac Surgery, University of Rochester Medical Center, Rochester, New York, USA. 18. Department of Cardiothoracic Surgery, Hofstra-Northwell School of Medicine, Uniondale, New York, USA; Department of Pediatrics, Hofstra-Northwell School of Medicine, Uniondale, New York, USA. 19. Division of Pediatric Cardiology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Abstract
BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: This establishes a novel statewide data resource for assessment of longitudinal outcome, health expenditure, and disparities for children with congenital heart disease.
BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: This establishes a novel statewide data resource for assessment of longitudinal outcome, health expenditure, and disparities for children with congenital heart disease.
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