The impact of distance to specialty and primary care on health outcomes and service use in adults with Down Syndrome

Our objective was to describe how distance to specialty clinics and availability of primary care providers affects health and service use for adults with Down syndrome in the United States. We used 2019 data from a cohort of Medicaid enrollees ≥18 years with Down syndrome. We identified specialty clinics and mapped distance from individual’s zip codes. We created quantiles by distance and primary care provider density. Our cohort of 89,382 adults showed differences in health outcomes and costs by their geographic proximity to clinics and their access to primary care providers. After adjustment, mortality rates in Quartile III of distance to the specialty clinics were 1.16 times (95% CI: 1.00, 1.34) and Quartile IV was 1.27 times (95% CI: 1.08, 1.49) that of Quartile I. Hospitalization rates were quantitatively similar across groups. Ensuring equitable access to both primary and specialized care for adults with Down syndrome remains a significant challenge.