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

Congenit Heart Dis. 2019 Sep;14(5):752-759. doi: 10.1111/chd.12819. Epub 2019 Jul 30.


Background: 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.

Objective: 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.

Methods: 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.

Results: Nearly half of the continental US population (45.1%) lives >1 hour drive to an ACHD center. Overall, 39.7% live 1-4 hours away, 3.4% live 4-6 hours away, and 2.0% live >6 hours away. Hispanics were disproportionately likely to live a >6 hour drive to a center (p < .001). Compared to people with <1 hour drive, those living >6 hours 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).

Conclusions: We estimate that ~45% of the continental US population lives >1 hour to an ACHD center, with 5.4% living >4 hours 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.

Keywords: access to care; adult congenital heart disease; disparities.

Publication types

  • Multicenter Study

MeSH terms

  • Adult
  • Female
  • Follow-Up Studies
  • Health Services Accessibility / statistics & numerical data*
  • Healthcare Disparities*
  • Heart Defects, Congenital / epidemiology
  • Heart Defects, Congenital / therapy*
  • Hospitals / statistics & numerical data*
  • Humans
  • Male
  • Morbidity / trends
  • Retrospective Studies
  • Socioeconomic Factors
  • United States / epidemiology