Navigating Pediatric to Adult Health Care: Lost in Transition Workshop

Wed, 9/30/2020 - 12:00pm
Thu, 10/1/2020 - 12:00pm

With improved rates of survival in childhood illnesses in the United States and globally, individuals are living longer with one or more chronic conditions.[i] To meet the needs of diverse populations with chronic physical/medical conditions or intellectual/developmental disabilities as they transition from pediatric to adult centric services, barriers to successful health care transition (HCT), methods and measures for defining HCT, and the identification of promising practices must be better understood. In accordance with leading efforts in the transition field, the health care transition needs to take occur within a context that considers typical developmental processes of the transition to adulthood as well as the multiple domains of functioning that are critical to life success (e.g., schooling, work, housing). [ii] 

The purpose of this workshop is to bring together experts from various backgrounds and disciplines to explore research areas of high priority for youth regarding needed transition services/support as part of routine care. Given increasing coordination efforts on the topic of health care transition across the United States Department of Health and Human Services (HHS), the National Institutes of Health (NIH) is uniquely poised to coordinate health care transition research efforts as they relate to each Institute’s, Center’s, and Office’s (ICO) mission and vision.

Workshop Goals

  • Bring together researchers and clinicians representing a broad range of pediatric diseases and conditions to learn from each other and define the current state of health care transition research
  • Use this knowledge and experience from a broad range of conditions to:
    • Identify common themes and highlight shared research gaps and opportunities that can complement ongoing disease-specific work across NIH ICOs and collaborating organizations
    • Further define the needs of youth with chronic physical/medical conditions or intellectual/ developmental disabilities in the context of health care transitions


View the Agenda pdf  201.82 KB


[i] Global Burden of Disease Collaborative Network. Global Burden of Disease Study 2016 (GBD 2016) All-cause Under-5 Mortality, Adult Mortality, and Life Expectancy 1970-2016. Seattle, United States: Institute for Health Metrics and Evaluation (IHME), 2017.

[ii] Blum, R. W., Garell, D., Hodgman, C. H., Jorissen, T. W., Okinow, N. A., Orr, D. P., & Slap, G. B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine.Journal of Adolescent Health,14(7), 570-576

The 2020 Federal Youth Transition Plan pdf  261 bytes: A Federal Interagency Strategy prepared by the Federal Partners in Transition (FPT) Workgroup.