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

Abstract

BACKGROUND AND OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

A ritka betegségben szenvedő gyermekek átvezetése a felnőttellátásba

“…Az egységes ajánlások segítik az individuális intézményi akadályok és a fejlesztést igénylő területek azonosítását [17]. Az átvezetés minőségi indikátorainak kidolgozása napjaink feladata, és fontos, hogy ezek az indikátorok a betegek és gondozóik szempontjait is tükrözzék [18]. Az eddig megnevezett, konszenzus szerinti legfontosabb indikátorok az életminőség, a betegelégedettség, az önhatékonyság, a betegségspecifikus tudás, az adherencia és az átvezetés során "elvesztett" betegek száma [19].…”

Transition competence as an indicator of health outcomes related to transition

“…In addition, health care satisfaction and QoL are important aspects to consider when pre‐ and post‐transfer states are compared with each other (Binks et al, 2007; McDonagh, 2007; Nakhla et al, 2008). Furthermore these two constructs were assessed more likely in a study with the context of transition but not within one study, thus, a further investigation of the relation of both constructs could rarely realize (Bailey et al, 2022). Cramm et al (2013) have demonstrated that satisfaction with transitional care before and after the transfer was positively associated with emotional, physical and social domains of health‐related QoL in adolescents with diabetes type 1, juvenile idiopathic arthritis and neuromuscular disorder.…”

But what do we mean by “health”? A critical perspective on the concept of health in the adolescent transition program of a Norwegian university hospital

“…The question however remains what an effective transition program is [9,10]. There is a still ongoing debate in the transition field internationally about how to best evaluate transition programs and what constitutes an effective program [4,[11][12][13].…”