PC1216: Quality Indicators for Youth Transitioning from Paediatric to Adult Healthcare Services: A Systematic Review

Background: Transition from paediatric to adult care is associated with adverse health outcomes and patient safety incidents for many adolescents and young adults with chronic physical, mental, and developmental conditions. Quality indicators are needed to compare and track performance in transition across chronic conditions, care settings, and jurisdictions. This systematic review aimed to identify quality indicators for transition to adult care that are broadly applicable across chronic illnesses and health systems.

Methods: MEDLINE, Embase, and CINAHL were searched covering earliest available date to July 2021. The Grey Matters framework was used to search the grey 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 methodologies (e.g., Delphi Study, RAND/UCLA Appropriateness Method). Quality indicators were organized into a framework categorized by illness-specificity (generic, illness-specific), level of care (patient, provider, parent/caregiver, health system-level), Donabedian model (structure, process, outcome), and Institute of Medicine (IOM) domain of healthcare quality (safe, effective, efficient, timely, equitable, patient-centered). Major measurement themes were assigned to each quality indicator. The Appraisal of Guidelines for Research and Evaluation (AGREE-II-QI) 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, 37% were illness-specific and limited to physical disease populations only. Further, 43% of quality indicators were at the patient level of care, 44% related to transition processes, 51% were patient-centered, and 0% were equity-focused (Table1). Common quality indicator themes (Table 2) included education (12%), continuity of care (8%), satisfaction (8%), and self-management/self-efficacy (7%). Few quality indicators were focused on youth life-skills and participation outcomes, including resilience (0.6%), social development (0.6%), and self-advocacy (0.6%). Using the AGREE-II-QI tool, quality indicator sets achieved an average rating of 43.8% for stakeholder involvement in the development process, 27.3% for rigor of development, and 8% for applicability.

Conclusion: While most quality indicators for transition were patient-centered outcomes, few were informed by youth and parents/caregivers. Notably, no quality indicators focused on equity despite the known impact of social determinants of health on transition outcomes. While approximately one third of identified quality indicators were developed in illness-specific contexts, none were focused on mental and/or developmental conditions. Low applicability ratings on critical appraisal reflect the lack of instructions for measurement and implementation of quality indicators into clinical practice. As such, there remains a need for generalizable quality indicators to evaluate transition across chronic illness populations and clinical settings. Further work is needed to develop an equitable key set of quality indicators for transition while engaging youth and parents/caregivers in the process.