Healthy transition: Roadmap for young adults with Down syndrome to adulthood

Am J Med Genet C Semin Med Genet. 2024 Mar;196(1):e32065. doi: 10.1002/ajmg.c.32065. Epub 2023 Sep 25.

Abstract

Healthcare transition is the purposeful and planned process for preparing young adults with Down syndrome for an adult oriented healthcare system. Significant gaps of a delayed, incomplete, siloed and decentered transition can be avoided when transition is approached in a longitudinal and holistic manner. Young adults with Down syndrome are specifically vulnerable to these gaps as the combination of intellectual differences and healthcare complexity leads to the need for a process that allows for appropriate preparation to develop the skills and process for an appropriate. To establish a successful transition care plan, the six core elements of policy, tracking, readiness, planning, transfer of care, and complete transition will compose the scaffolding of the transition process and address these gaps in care. A comprehensive tool kit including policy statements, healthcare transition tracking forms, the TRAQ tool, and template portable medical summaries will operationalize those elements and counteract any gaps in the transition process.

Keywords: Down syndrome; healthcare transition; portable medical summary; readiness assessment; transition plan.

Publication types

  • Review

MeSH terms

  • Down Syndrome*
  • Humans
  • Transition to Adult Care*
  • Young Adult