Low Rates of Preventive Healthcare Service Utilization Among Adolescents and Adults With Down Syndrome

People with Down syndrome have health risks that require specific lifelong preventive health care. With increasing life expectancy, people with Down syndrome also face health conditions typical of their unaffected peers and thus need coordinated health care. The purpose of this study is to describe rates of age/sex- and Down syndrome-specific preventive healthcare activities among adolescents and adults with Down syndrome.

Using Medicaid claims (2006-2010) in California, Colorado, Michigan, and Pennsylvania, the cohort was defined as people with Down syndrome aged ≥12 years seen by primary care providers and enrolled in Medicaid for ≥45 of 60 months without dual Medicare enrollment (n=3,501). Age focus-consistent primary care providers were defined as having a focus concordant with a patient's age: 12-17 years, child or mixed-focus; ≥26 years, adult or mixed-focus; 18-25 years, any focus. Differences in healthcare activities were evaluated using Pearson's chi-square, Fisher's exact, and Kruskal-Wallis tests. Analyses were performed in 2015-2017.

Of the cohort, 79% had an age focus-consistent primary care provider. However, 40% of adults aged ≥26 years received care from a child-focused primary care provider. Only 43% with an age focus-consistent provider had ≥1 well examination (age focus-inconsistent primary care provider: 35%, p<0.001). Most preventive activities had poor rates (<50%) regardless of age focus consistency between provider and patient age or whether they were age/sex- or Down syndrome-specific (well examinations; vaccinations; sleep apnea; hearing; and breast, cervical, and colon cancer screenings). Lipids, vision, and thyroid screenings reached moderate levels (50% to <80%).

Rates of age/sex- and Down syndrome-specific preventive recommendations were low among adolescents and adults with Down syndrome, regardless of the age focus consistency of their primary care provider. This represents a significant opportunity to improve primary care in this vulnerable population.