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

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.