Linking State Medicaid and Congenital Heart Surgical Registry Data: Building Capacity to Assess Disparities in Longitudinal Outcomes and Value for Children with Congenital Heart Disease

Icahn School Of Medicine At Mount Sinai, New York NY

Investigators

Linked publications & trials

Abstract

Congenital heart defects are the most common birth defects managed in the United States, affecting 1% of live births. Survivors often describe significant, chronic disease. Yet, limited longitudinal data exist. Further, income and other demographics are associated with ~20% variation in mortality, even after controlling for clinical risk and center . Yet mechanisms remain unknown. Understanding how the healthcare system contributes to differences in outcomes across populations can reveal actionable targets. In our parent R01, we created the first, population-based, congenital heart data collaborative for assessment of risk-adjusted longitudinal outcomes and healthcare utilization: The Congenital Heart Surgery Collaborative for Longitudinal Outcomes and Utilization of Resources (CHS-COLOUR). Focusing on New York (NY) State Medicaid patients, we linked patient demographics and diagnostic and surgical details from centers’ cardiac surgical registries to longitudinal outcomes and healthcare utilization from the National Death Index and NY Medicaid claims. We next linked these data to pregnant parent health claims and Census block group-level measures of neighborhood demographics / economics / rurality. We found that among children on Medicaid, certain populations were more likely to see the more experienced pediatric cardiologists and cardiac surgeons—even within the same surgical centers. Further, some of these physician differences mediated 10-20% of differences in risk-adjusted outcomes across demographics. While these data are powerful, improving outcomes requires understanding generalizability of our findings and identifying influential, modifiable healthcare system characteristics that contribute to these differences in access and outcomes. For this R01 renewal, we bring together the clinical leadership and registry data from 25 congenital heart centers across 4 states in 4 distinct regions of the country (NY, Massachusetts, Colorado, & Texas). We add quantitative and qualitative health services research and public health experts and All-Payer Claims Databases. We will use these data to accomplish the following Aims: 1) Quantify the degree to which access to greater experience / quality multidisciplinary providers explain differences in risk-adjusted, longitudinal, congenital heart outcomes; 2) quantify how much congenital heart multidisciplinary provider teams explain differences in risk-adjusted, longitudinal outcomes, leveraging innovative network analyses and causal mediation; and 3) characterize how families from different backgrounds experience interactions with congenital heart providers, provider teams, healthcare delivery systems, and health insurers, from the prenatal period through longitudinal follow-up. Achieving these Aims will: 1) establish a powerful resource for assessment of longitudinal congenital heart surgical outcomes, and healthcare utilization across states and payers; 2) identify modifiable healthcare system characteristics that mediate access and outcomes; and 3) bring together key stakeholders and multidisciplinary investigators with knowledge and power to use these data to effect change.