A model for geographic and sociodemographic access to care disparities for adults with congenital heart disease.

Abstract

Follow-up at a regional adult congenital heart disease (ACHD) center is recommended for all ACHD patients at least once per the 2018 ACC/AHA guidelines. Other specialties have demonstrated poorer follow-up and outcomes correlating with increased distance from health care providers, but driving time to regional ACHD centers has not been examined in the US population. To identify and characterize potential disparities in access to ACHD care in the US based on drive time to ACHD centers and compounding sociodemographic factors. Mid- to high-volume ACHD centers with ≥500 outpatient ACHD visits and ≥20 ACHD surgeries annually were included based on self-reported, public data. Geographic Information System mapping was used to delineate drive times to ACHD centers. Sociodemographic data from the 2012-2016 American Community Survey (US Census) and the Environmental Systems Research Institute were analyzed based on drive time to nearest ACHD center. Previously established CHD prevalence estimates were used to estimate the similarly located US ACHD population. Nearly half of the continental US population (45.1%) lives >1hour drive to an ACHD center. Overall, 39.7% live 1-4hours away, 3.4% live 4-6hours away, and 2.0% live >6hours away. Hispanics were disproportionately likely to live a >6hour drive to a center (p<.001). Compared to people with <1hour drive, those living >6hours away have higher proportions of uninsured adults (29% vs. 18%; p<.001), households below the federal poverty level (19% vs. 13%; p<.001), and adults with less than college education (18% vs. 12%; p<.001). We estimate that ~45% of the continental US population lives >1hour to an ACHD center, with 5.4% living >4hours away. Compounding barriers exist for Hispanic, uninsured, lower socioeconomic status, and less-educated patients. These results may help drive future policy changes to improve access to ACHD care.