"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.

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?

A Decision Aid for Nutrition Support is Acceptable in the Pediatric Hospital Setting.

PURPOSE: Incorporating a Decision Aid (DA) about nutrition support into the general pediatric healthcare setting may improve parent and patient understanding about the risks and benefits of nutrition support options. We aimed to evaluate the acceptability and usability of our newly developed DA for parents of children in the general pediatric healthcare setting who require nutrition support. DESIGN AND METHODS: Participants were 18 parents with a child who had received nutrition support; and 12 Healthcare Professionals (HCPs) involved in pediatric nutrition support discussions. Parents' and HCPs' ratings of acceptability and feasibility of the booklet, and parents' perceived knowledge acquisition after reading the booklet were assessed. RESULTS: Parents were satisfied with the DA, reporting that it was an appropriate length and unbiased. Most parents felt the DA was relevant to their decision-making, improved understanding, and would recommend it to other parents. HCPs felt that the booklet clearly described the essential information for nutrition support options, but less certain of the booklets' impact on parent decision-making. Regardless, most HCPs would recommend the booklet to other clinicians. CONCLUSION: Our decision aid appears to be acceptable and useful for parents deciding on nutrition support for their child in the general pediatric hospital setting. PRACTICE IMPLICATIONS: A DA may facilitate shared decision-making through improved understanding of the risks and benefits of different nutrition support options in the pediatric setting. Further evaluation is required with specific pediatric conditions, to determine the effectiveness for parents actively deciding on their child's nutrition support.