Department of Oncology, University of Calgary, Calgary, AB T2N 1N4, Canada.
Tom Baker Cancer Centre, Calgary, AB T2N 4N2, Canada.
Curr Oncol. 2024 May 17;31(5):2874-2880. doi: 10.3390/curroncol31050219.
Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.
青少年和年轻成年人(AYA;15-39 岁)被诊断患有癌症,他们具有独特的医疗和心理社会需求。通过专注于对他们最重要的主题的研究,可以更好地满足这些需求。然而,加拿大目前没有针对 AYA 癌症的以患者为中心的研究议程。本文描述了为建立加拿大 AYA 癌症前 10 项研究重点的优先事项制定伙伴关系(PSP)的早期开发和项目方案。该项目遵循詹姆斯林德联盟(JLA)概述的 PSP 方法,让患者、护理人员和临床医生参与研究重点制定。JLA PSP 的步骤包括成立指导小组和项目合作伙伴、收集不确定性、数据处理和验证不确定性、中期重点设置以及最终重点设置研讨会。AYA 癌症 PSP 将确定由加拿大 AYA 患者、护理人员和临床医生确定的前 10 项研究重点清单,这些清单将在研究界广泛发布和共享。第一次指导小组会议于 2023 年 4 月举行,项目正在进行中。制定以患者为中心的 AYA 癌症研究议程将促进长期而有影响力的研究重点,并最终改善加拿大 AYA 癌症患者的结局。