Prevalence of Complex Medical Conditions Among Teens and Young Adults in Medicaid: National and State Estimates

An increasing number of children with complex medical conditions (CMCs) survive into adulthood. Medicaid is a key payer for this population, yet enrollment in Medicaid for adolescents with CMCs through the transition to adulthood is not well-described. Our objective is to measure the prevalence of CMCs among older adolescents and young adults in Medicaid, overall and within states.

We used enrollment and medical claims data from the Transformed Medicaid Statistical Information System Analytic Files to analyze a cross-sectional census of individuals aged 15-25 enrolled 11+ months in comprehensive Medicaid in 2016 from 47 states and the District of Columbia. Individuals with CMCs were identified by applying a validated claims-based algorithm (Pediatric Medical Complexity Algorithm). We compared the prevalence of CMCs by age, type of diagnosis, and geography.

About 9.3 million Americans between 15 and 25 years (21% of individuals in this age bracket) met our eligibility criteria. Of these enrollees, 3.8 percent (352,710 people) had a CMC. The prevalence of individuals with CMCs was higher among enrollees at the age of 19 and above (3.6%-5.4%) compared with enrollees 15-18 (3.1%). Mental health diagnoses, progressive disorders, and neurological diagnoses were the most common components of a CMC. States varied substantially in the percent of this age group enrolled in Medicaid and the percent of enrollees with CMCs.

These results can be used as foundational information for national and state policymakers to allocate resources and by researchers to calibrate public program expectations and benchmark future research.