Quality Indicators for Youth Transitioning to Adult Care: A Systematic Review.

Abstract

Transition from pediatric to adult care is associated with adverse health outcomes for many adolescents with chronic illness. We identified quality indicators for transition to adult care that are broadly applicable across chronic illnesses and health systems. Medline, Embase, and the Cumulative Index to Nursing and Allied Health Literature were searched, covering earliest available date to July 2021. The Gray Matters framework was used to search gray literature. Two independent reviewers screened articles by title and abstract, followed by full-text review. Disagreements were resolved by a third reviewer. Studies were included that identified quality indicators developed via consensus-building methods. Indicators were organized into a framework categorized by illness specificity, level of care, Donabedian model, and Institute of Medicine quality domain. Appraisal of Guidelines for Research and Evaluation tool was used for critical appraisal. The search identified 4581 articles, of which 321 underwent full-text review. Eight peer-reviewed studies and 1 clinical guideline were included, identifying 169 quality indicators for transition. Of these, 56% were illness specific, 43% were at the patient level of care, 44% related to transition processes, and 51% were patient centered and 0% equity focused. Common indicator themes included education (12%), continuity of care (8%), satisfaction (8%), and self-management/self-efficacy (7%). The study was limited by quality indicators developed through consensus-building methodology. Although most quality indicators for transition were patient-centered outcomes, few were informed by youth and parents/caregivers, and none focused on equity. Further work is needed to prioritize quality indicators across chronic illness populations while engaging youth and parents/caregivers in the process.