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“我们拥有所有这些知识可以提供,所以将我们当作一种资源来利用”:与青少年和青年癌症幸存者合作以确定由消费者主导的研究重点。

"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.

作者信息

Schilstra Clarissa E, Sansom-Daly Ursula M, Schaffer Maria, Fardell Joanna E, Anazodo Antoinette C, McCowage Geoffrey, Fletcher Jamie I, Marshall Glenn M, Buchhorn-White Jennifer, Evtushenko Michael, Trahair Toby N, Ellis Sarah J

机构信息

School of Women's and Children's Health, Faculty of Medicine, UNSW Sydney, Kensington, Australia.

Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, Australia.

出版信息

J Adolesc Young Adult Oncol. 2022 Apr;11(2):211-222. doi: 10.1089/jayao.2021.0052. Epub 2021 Jul 22.

DOI:10.1089/jayao.2021.0052
PMID:34297633
Abstract

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? 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. Six survivors participated ( age = 24.2 years,  = 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: 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?

摘要

越来越多的人鼓励青少年和青年(AYA)癌症幸存者作为消费者参与研究,但很少有研究确定让他们参与研究的方法的可行性和可接受性。我们旨在确定:(1)以消费者为主导、基于研讨会的研究重点确定方法的可行性和可接受性如何?以及(2)澳大利亚AYA消费者认可哪些研究重点?邀请了15至30岁被诊断患有癌症且目前年龄小于35岁的AYA癌症幸存者参与。这些AYA完成了研讨会前的调查,从英国的詹姆斯·林德联盟列表中选出他们的前三大优先事项,参加了一个90分钟的焦点小组,并完成了研讨会后的评估调查。我们通过审查规划和实施过程中成功的考虑因素、挑战和促成因素来评估研讨会的可行性。通过参与者的评估调查和主持人的非正式反馈来评估可接受性。前三大优先事项是根据研讨会前的调查和焦点小组数据确定的。六名幸存者参与了(年龄=24.2岁,治疗后=5年,83%为女性)。所有人都表示,研讨会是与研究人员互动的一种可接受方式。成本和招募挑战限制了研讨会的可行性。AYA的首要优先事项是:AYA幸存者认为我们的研讨会是参与研究重点确定的一种可接受方式。然而,这种方法的可行性取决于研究人员可用的资源。需要进一步的研究来确定最佳的参与方式:什么对AYA最可接受且对研究人员最可行?

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