Transition Planning Among US Youth With and Without Special Health Care Needs

Abstract

Background: Researchers have shown that most youth with special health care needs (YSHCN) are not receiving guidance on planning for health care transition. This study examines current transition planning among US youth with and without special health care needs (SHCN).

Methods: The 2016 National Survey of Children's Health is nationally representative and includes 20 708 youth (12-17 years old). Parents and/or caregivers were asked if transition planning occurred, based on the following elements: (1) doctor or other health care provider (HCP) discussed the eventual shift to an HCP who cares for adults, (2) an HCP actively worked with youth to gain self-care skills or understand changes in health care at age 18, and (3) youth had time alone with an HCP during the last preventive visit. Sociodemographic and health system characteristics were assessed for associations with transition planning.

Results: Nationally, 17% of YSHCN and 14% of youth without SHCN met the overall transition measure. Older age (15-17 years) was the only sociodemographic factor associated with meeting the overall transition measure and individual elements for YSHCN and youth without SHCN. Other sociodemographic characteristics associated with transition planning differed among the 2 populations. Receipt of care coordination and a written plan was associated with transition planning for YSHCN.

Conclusions: This study reveals that few youth with and without SHCN receive transition planning support. It underscores the need for HCPs to work with youth independently and in collaboration with parents and/or caregivers throughout adolescence to gain self-care skills and prepare for adult-focused care.