Development of System Performance Indicators for Adolescent and Young Adult Cancer Care and Control in Canada

To develop an expert-group, consensus-based list of system performance indicators to be used for monitoring, evaluating, and benchmarking progress for cancer care and control in adolescents and young adults (AYAs) in Canada. A national multidisciplinary panel of AYA oncology experts was convened; they prepared a literature review and undertook a brainstorming exercise to create a comprehensive list of indicators based on a previously defined framework for AYA cancer care and control in Canada. A modified Delphi process was then undertaken to cull the list based on 3 quick screen criteria. Three rounds of ranking were required. The fourth stage employed a face-to-face meeting, and the final stage utilized a survey to rank the indicators on the basis of importance and feasibility. Nineteen participants contributed to the 5-stage process. From an initial list of 114 indicators, 14 were ultimately endorsed, representing 5 themes: active care, survivorship, psychosocial issues, palliative care, and research. The 5 highest ranked indicators were assessed as very to moderately feasible, with only a single indicator (clinical trial enrollment) in the top 5 assigned a least feasible ranking. The 14 indicators provide a starting point for the development of a standard set of metrics for AYA cancer care and control in Canada and have potential for international utility. •Metrics for evaluating and monitoring are essential for successful programs of cancer care and control.•Healthcare metrics for adolescent and young adult (AYA) patients with cancer have not been researched adequately.•This article provides a first set of indicators in Canada for AYAs (15-39 years of age) with cancer, a population with special needs who have been systematically under-served.•The proposed indicators can serve as metrics to evaluate and monitor changes in AYA cancer care and control.