Lost in Transition: Gaps in Care as Teens with Special Health Care Needs Transition from Pediatric to Adult Care Systems

Purpose

Of the more than 13 million CYSHCN in the United States, 750,000 of them age out of pediatric care each year. Yet only 22% successfully transition to adult care. For youth who don’t transition successfully, the result can be gaps in care, which increase the risk of negative health outcomes. This grant will support the first-ever population-level analysis of the experience of transition for CYSHCN covered by Medicaid. The research team will produce national estimates of age-related changes in outcomes such as Medicaid access, primary care availability, and health care and long-term care usage and spending. This work will provide foundational knowledge for future policy interventions and research, with the long-term goal of ensuring that more young adults with special health care needs transition smoothly to adult care.