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Down Syndrome: Toward Optimal Trajectories and Health Equity using Medicaid Analytic eXtract

Funding: 1R01AG073179-01

PI: Eric Rubenstein, PhD ScM

We want to improve health across the life course for individuals with Down syndrome. To do this, we are conducting a research study that uses Medicaid data. Medicaid is a type of public health insurance that provides health coverage to individuals with disabilities or low income in the United States. Nearly all adults with Down syndrome use Medicaid. As such, we are interested in using Medicaid data to further understand the causes of obstructive sleep apnea, dementia, and mortality among individuals with Down syndrome. We hope that the results of this study will help clinicians create guidelines for treatment, researchers create interventions, and advocates perform public health messaging and policy change.

We have built a longitudinal data set of >135,000 adults with Down syndrome in Medicaid and or Medicare from 2011-2019 with the purchase of data from 2020-2022 underway. This cohort reflects nearly all adults with Down syndrome (Rubenstein, Michals, et al., 2023; Rubenstein et al., 2024; Rubenstein, Tewolde, et al., 2023) and is two orders of magnitude greater than other Down syndrome cohorts. With these data we have published five manuscripts, have two manuscripts under review, given nine invited talks, and been awarded the Boston University School of Public Health Research Innovation Award. We have also published three related manuscripts and have one under review aimed at accomplishing our goals using other data sources (De La Garza et al., 2023; Kyprianou et al., 2023; Rubenstein, Kyprianou, et al., 2023)

We found that adults with Down syndrome are reliant on Medicaid and Medicare services with more use and cost compared to peers with intellectual disability. We have documented that 40% of adults with Down syndrome are dual enrolled in Medicare and Medicaid, with dual enrollment being associated with race and region. Specific to the conditions in our aims, we have documented mortality in the Down syndrome population and evaluated the interaction of Down syndrome and race/ethnicity on mortality rate and hospitalization (Tewolde et al., in press). Among those with Down syndrome, age-adjusted mortality rate did not differ between Black and white racial groups (rate ratio: 0.96, 95%CI: 0.92, 1.01) while mortality rate was lower for Pacific Islander (0.80), Asian (0.71), Native (0.77), and Mixed-race groups (0.50). Hospitalization rates were higher for all marginalized groups compared to the white group. When assessing the interaction between racial/ethnic group and Down syndrome, Black, Native Americans, and mixed-race groups exhibited a negative additive interaction for mortality rate and all groups except Native Americans exhibited positive additive interaction for hospitalization.