Title: Quality indicators for transition from paediatric to adult care for youth with chronic physical, developmental, and mental health conditions: a national consensus-building multi-stakeholder initiative
Funder: Canadian Institutes of Health Research (CIHR)
Role: Nominated Principal Investigator: Toulany A; Co-Principal Investigators: Mooney S, Munce SE, Stromquist L; Co-Investigators: Bailey K, Barber C, Batthish M, Cleverly K, Dimitropoulos G, Gorter J, Guttman B, Hebert M, Khodyakov D, Lo L, MacGregor L, Mukerji G, Pidduck J, Shulman R, Trbovich P.
Study summary: Our systematic review identified 169 quality indicators for transition to adult care for youth with diverse chronic conditions and highlighted key gaps in literature. Although most indicators were patient-centered outcomes, few were informed by youth and parents/caregivers, and none focused on equity. Many studies were limited to physical illnesses and excluded mental illnesses and/or developmental disabilities. Consequently, there are no robust quality indicators that can be used in transition across all chronic conditions, hindering our ability to broadly evaluate transition to adult care at a health system level in Canada. This study has led to the development of a grant to fund further work to prioritize quality indicators across chronic illness populations while engaging youth and parents/caregivers in the process.