Košir U, Lysen F, Unterecker N, Deželak T, Sturesson E, Shakhnenko I, Stark D, Rizvi K, Darlington A-S, Wee L, van der Graaf W T A, Husson O
Youth Cancer Europe, Cluj-Napoca, Romania.
Department of Society Studies, Maastricht University, Maastricht, The Netherlands.
ESMO Open. 2025 Mar;10(3):104478. doi: 10.1016/j.esmoop.2025.104478. Epub 2025 Feb 24.
Patient involvement and engagement (PI&E) in health care and research has gained prominence, shifting towards person-centred approaches and shared decision making. Patients actively participating in health care design and research lead to better quality and efficiency of care. However, implementing meaningful PI&E is challenging and requires adequate resources and evaluation frameworks so that it does not result in tokenism. This is particularly important when considering niche areas like adolescents and young adults (AYAs) with cancer. As AYAs' unique needs continue to gain recognition, it is becoming increasingly important to incorporate their expertise and diverse perspectives in navigating care. Large-scale European consortia that focus specifically on AYAs offer opportunities to establish successful partnerships with AYAs in the design and creation of the next generation of equitable, diverse, and inclusive cancer care. Concrete actions for meaningful AYA PI&E are discussed.
患者参与医疗保健和研究（PI&E）已日益受到重视，正朝着以患者为中心的方法和共同决策转变。患者积极参与医疗保健设计和研究可提高护理质量和效率。然而，实施有意义的PI&E具有挑战性，需要足够的资源和评估框架，以免流于形式。在考虑像青少年和青年成人（AYA）癌症患者这样的特定领域时，这一点尤为重要。随着AYA的独特需求不断得到认可，在护理过程中纳入他们的专业知识和多样观点变得越来越重要。专门关注AYA的大型欧洲联盟为在设计和创建下一代公平、多样和包容的癌症护理方面与AYA建立成功的伙伴关系提供了机会。本文讨论了针对有意义的AYA患者参与和参与的具体行动。
