Taylor Rachel M, Aslam Natasha, Lea Sarah, Whelan Jeremy S, Fern Lorna A
1 Cancer Division, University College London Hospitals NHS Foundation Trust , London, United Kingdom .
2 Faculty of Health and Wellbeing, Canterbury Christ Church University , Kent, United Kingdom .
J Adolesc Young Adult Oncol. 2017 Sep;6(3):459-469. doi: 10.1089/jayao.2016.0085. Epub 2017 Mar 24.
To maximize retention of participants in a longitudinal cohort study, we sought to understand young peoples' views about barriers and facilitators to continuing study participation.
Ten young people with a previous cancer diagnosis aged 15-24 participated in a 1 day workshop. The workshop used participatory methodology consisting of three exercises as follows: role play/scene setting; force field analysis of research participation in small groups; and focus group discussion. A final prioritization exercise was administered individually after the workshop.
Twenty-four barriers to maintaining participation were summarized in five themes as follows: life commitments; concerns specific to the study; emotional barriers; practical barriers; and other reasons. The top 3 specific barriers were as follows: not a priority/other things are more important; too time consuming; and forgetting/memory. The top 3 facilitators for participation were as follows: wishing to help other young people; giving back to the cancer community; and honoring an initial commitment to participation. The top 3 suggested solutions to encourage continued participation were as follows: reminder text message or email before each survey to check preferred method of delivery; breaking up the online survey into modules to make completion less overwhelming; and consolidation of study information in one location.
Involving young people in designing a retention strategy for young people with cancer has informed the BRIGHTLIGHT retention strategy. Patient and public involvement is imperative for successful research but measuring impact is challenging. The success of implementing the changes to optimize retention was shown in the increase in retention in Wave 3 from 30% to final participation of 58%.
为了在一项纵向队列研究中最大限度地提高参与者的留存率，我们试图了解年轻人对于继续参与研究的障碍和促进因素的看法。
10名曾被诊断患有癌症的15至24岁年轻人参加了为期1天的研讨会。该研讨会采用了参与式方法，包括以下三个环节：角色扮演/场景设定；小组对研究参与情况的力场分析；以及焦点小组讨论。研讨会结束后，每位参与者单独进行了最后的优先级排序活动。
维持参与的24个障碍归纳为以下五个主题：生活事务；研究特有的顾虑；情感障碍；实际障碍；以及其他原因。排在前三位的具体障碍如下：不是优先事项/其他事情更重要；耗时过长；以及遗忘/记忆力问题。排在前三位的参与促进因素如下：希望帮助其他年轻人；回馈癌症群体；以及履行最初参与研究的承诺。排在前三位的鼓励继续参与的建议解决方案如下：每次调查前发送提醒短信或电子邮件，以确认首选的发送方式；将在线调查分成多个模块，使完成调查的压力更小；以及将研究信息整合到一个地方。
让年轻人参与为癌症青年患者设计留存策略，为“光明计划”留存策略提供了依据。患者和公众的参与对于成功开展研究至关重要，但衡量其影响具有挑战性。实施优化留存率的变革所取得的成功体现在第三轮的留存率从30%提高到最终参与率的58%。
