Surveillance of Congenital Heart Defects Among Children, Adolescents, and Adults - Congenital heart disease affects approximately 1 in 100 newborns and, in general, 1 in 150 people of all ages living in the United States. With improved treatments, adults with congenital heart disease now exceed the number of children. An estimated 1 in 8 adults live with a severe heart anomaly, treatable but not completely curable, and require lifelong specialized care. Yet, despite the high number of affected individuals and their significant and costly health care needs, there remain significant gaps in our understanding of the clinical and public health impact of congenital heart disease beyond infancy and early childhood. Accurate information on key issues such as population-based prevalence, morbidity, mortality, use of health resources, and potential disparities is scarce and often limited to individuals able to access specialized care. In Utah, we are uniquely positioned to help address these gaps by leveraging the state’s linked clinical and administrative data systems, its geographic and socioeconomic diversity, and the experience and expertise of a multidisciplinary team of epidemiologists, data scientists, and clinicians with decades of focused work on congenital heart disease. This project, building on Utah’s prior public health projects on similar issues (CDC-supported Lifespan and STAR studies) proposes to establish a statewide population-based surveillance program of individuals with congenital heart disease (newborns to adults 64 years of age) to document the health impact, resource utilization, and potential disparities through the lifespan. The project will generate crucial information on morbidity and complications, including those related to COVID-19 and respiratory viruses, mortality and survival, and sources and patterns of health care use. Layering this information on sociodemographic information (personal and neighborhood level) will provide indications of potential health disparities, by geography (e.g., rural vs. urban residency), race and ethnicity, insurance status, and indices of deprivation. This information will be particularly relevant as it focuses on a recent time window (2021-2023). The team will identify individuals with congenital heart disease using the Utah Population Database as the central hub. This unique population-based resource in Utah has already established and continuously updated linkages to multiple clinical and administrative data sources, including medical records, vital records, birth defect surveillance, Medicaid, All Payers Claims Database, among others. Using these layers of information on sociodemographic indicators, health outcomes, use of resources, residence (via geocoding), we will generate a curated, deduplicated, and deidentified dataset for pooled analyses. We will develop a systematic communication plan to disseminate information about the findings to multiple stakeholders, including the medical and public health community, family support groups and policy makers. The information generated through the project will serve to 1) improve our understanding of the prevalence of congenital heart disease, age-specific mortality, and major comorbidities; 2) improve our understanding of the healthcare use and sources of care for affected individuals across the lifespan; 3) help assess the impact of state and national policies; and 4) improve the quality of data for action.
