"We Have All This Knowledge to Give, So Use Us as a Resource": Partnering with Adolescent and Young Adult Cancer Survivors to Determine Consumer-Led Research Priorities.

Abstract

Purpose: Involvement of adolescent and young adult (AYAs) cancer survivors as consumers in research is increasingly encouraged, yet few studies have identified the feasibility and acceptability of methods used to involve them. We aimed to identify: (1) How feasible and acceptable is a consumer-driven, workshop-based research priority-setting approach? And (2) what research priorities do Australian AYA consumers endorse? Methods: AYA cancer survivors diagnosed 15-30 years old and currently younger than 35 years were invited to participate. The AYAs completed a pre-workshop survey to rank their top three priorities from the United Kingdom-based James Lind Alliance list, participated in a 90-minute focus group, and completed a post-workshop evaluation survey. We assessed the workshop feasibility by reviewing considerations, challenges, and enablers of success in the planning and conduct processes. Acceptability was assessed through participants' evaluation surveys and facilitators' informal reflections. The top three priorities were determined from pre-workshop surveys and focus group data. Results: Six survivors participated (M age = 24.2 years, M = 5 years post-treatment, 83% female). All reported that the workshop was an acceptable way to engage with researchers. Costs and recruitment challenges limited the workshop's feasibility. The AYAs' top priority was: What psychological support package improves psychological well-being, social functioning, and mental health during and after treatment?Discussion: The AYA survivors found our workshop to be an acceptable way to engage in research priority-setting. However, the feasibility of this approach depends on the resources available to researchers. Future research is needed to define the optimal method of engagement: What is most acceptable for AYAs and feasible for researchers?