Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, Rotterdam, The Netherlands.
Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.
Acta Oncol. 2023 Aug;62(8):961-968. doi: 10.1080/0284186X.2023.2238554. Epub 2023 Jul 28.
The interest in patient involvement is increasing in health research, however, is not yet well described in adolescents and young adults (AYA) with palliative cancer, such as AYAs with an uncertain and/or poor cancer prognosis (UPCP). This study aimed to document the process of involving AYAs with a UPCP as partners in research including their experiences, the impact, and our lessons learned.
AYAs with a UPCP were recruited healthcare professionals and patients to involve as research partners in the qualitative interview study. To define their role and tasks in each research phase we used the participation matrix.
In total six AYAs with a UPCP were involved as research partners and five as co-thinkers. They were involved in initiating topics, developing study design, interviewing, analyzing data, and dissemination of information. Together with the researcher, they co-produced the information letters and interview guides and implemented aftercare and extra support. The research partners ensured that the data was relevant, correctly interpreted and that results were translated to peers and clinical practice. AYAs themselves felt useful, found people who understand their challenges, and were able to create a legacy.
The benefits of involving AYAs with a UPCP as research partners cannot be stressed enough, both for the study as well as for the AYAs themselves, but there are challenges. Researchers should anticipate and address those challenges during the planning phase of the study. This article provides practical tips on how to do so.
在健康研究中，患者参与的兴趣日益增加，但在患有姑息治疗癌症的青少年和年轻人（AYA）中，这种兴趣尚未得到很好的描述，例如预后不确定和/或较差的癌症 AYA（UPCP）。本研究旨在记录让 UPCP 的 AYA 作为研究伙伴参与的过程，包括他们的经验、影响以及我们的经验教训。
招募了患有 UPCP 的 AYA 和医疗保健专业人员和患者作为研究伙伴，参与定性访谈研究。为了在每个研究阶段定义他们的角色和任务，我们使用了参与矩阵。
共有六名患有 UPCP 的 AYA 作为研究伙伴和五名共同思考者参与。他们参与了发起主题、制定研究设计、访谈、数据分析和信息传播。他们与研究人员一起共同编写了信息信和访谈指南，并实施了随访和额外支持。研究伙伴确保数据是相关的、正确解释的，并且结果被翻译给同行和临床实践。AYA 自己感到有用，找到了理解他们挑战的人，并且能够创造遗产。
让患有 UPCP 的 AYA 作为研究伙伴参与的好处再怎么强调也不为过，这对研究本身和 AYA 自己都是如此，但也存在挑战。研究人员应在研究计划阶段预测并解决这些挑战。本文提供了如何做到这一点的实用技巧。
