Background: In adolescents and young adults (AYAs) with cancer, the importance of patient-centered research outcomes is increasingly acknowledged and there is a need for consensus on the most relevant outcomes. This review provides a comprehensive overview of outcomes relevant to AYAs with cancer in order to develop an AYA-specific core outcome set (COS) as part of the European project STRONG-AYA. Methods: A literature search was conducted to identify relevant articles in five databases. Each article was reviewed by two independent researchers, using Rayyan (an online tool) to screen articles by their title/abstract and then by their full text. Subsequently, the data were extracted using a predefined, tailored extraction framework. Results: In total, 17,301 articles were screened, of which 1631 were included in the analyses. Registry studies (52.9%) were the most used study type. Well-represented continents were North America (50.3%) and Europe (27.8%). Of the five core areas, functioning (47.0%) and epidemiology (44.9%) were covered most often, followed by physiological/clinical (42.4%), resource use (6.1%), and adverse events (4.5%). The outcome domains that were represented the most include mortality/survival (43.1%), delivery of care (23.4%), outcomes relating to neoplasms (22.7%), and emotional functioning/well-being (19.2%). Conclusions: This literature review provides a foundation for the development of an AYA-specific COS for improving the relevance and efficiency of measuring outcomes, the pooling of (international) research data, and the value of care for current and future AYAs with cancer. Finalization and refinement of the COS should be a priority for future research.
背景：在青少年和年轻成人癌症患者中，以患者为中心的研究结果日益受到重视，且需就最相关的结果达成共识。本综述全面概述了与青少年和年轻成人癌症患者相关的结果，旨在作为欧洲STRONG-AYA项目的一部分，制定针对该群体的核心结果集。方法：通过检索五个数据库进行文献筛选，由两名独立研究人员使用Rayyan在线工具对文章标题/摘要及全文进行双重筛选。随后采用预定义的定制提取框架进行数据提取。结果：共筛选17,301篇文章，其中1,631篇纳入分析。登记研究（52.9%）是最常用的研究类型。北美（50.3%）和欧洲（27.8%）的研究占比较高。在五大核心领域中，功能状态（47.0%）和流行病学（44.9%）覆盖最广，其次为生理/临床指标（42.4%）、资源利用（6.1%）和不良事件（4.5%）。出现频次最高的结果域包括死亡率/生存率（43.1%）、医疗服务实施（23.4%）、肿瘤相关结果（22.7%）以及情绪功能/健康状况（19.2%）。结论：本综述为开发青少年和年轻成人特异性核心结果集奠定了基础，有助于提升结果测量的相关性与效率，促进（国际）研究数据整合，并增强当前及未来该群体癌症护理的价值。核心结果集的最终确定与完善应成为未来研究的优先方向。
肿瘤(癌症)患者之家