EUonQoL: Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe

EUonQOL的目标是开发、试点和验证EUonQOL-Kit，这是一个以患者为导向的统一系统，用于根据癌症患者和幸存者的评估和偏好评估生活质量(QOL)。EUON QOL-Kit将从患者的角度开发，以数字方式管理，在EU27及其相关国家和地区以多种语言提供，并在未来适用于定期调查，为欧盟在癌症方面的使命做出贡献。EUON QOL的核心是采用多方利益相关者、共同设计方法，让患者代表、医疗保健专业人员、管理人员、政策制定者和公民参与所有与项目相关的活动。将审查现有的QOL工具，确定所有相关来源的范围。这项审查将在联合设计共识的背景下与利益相关者和患者的偏好一起使用，以找出差距，并建立从患者、临床医生和社会的角度相关的所有生活质量维度。一个由最有才华的专家组成的多学科研究小组将开发EUOQOLKIT，该工具包将在项目24个月内使用数字数据收集在试点调查中得到验证。共有4000名癌症患者和幸存者将通过欧盟癌症中心网络进行登记。还将对可能影响癌症患者和幸存者生存质量的因素进行分析。将探讨实施和开发战略，以及与其他癌症特派团项目和行动的联系，以制定未来的定期调查。EUonQOL由研究机构、癌症中心以及参与癌症研究的科学、专业和患者代表组织组成，所有这些组织在开发自我报告的QOL测量方面都具有丰富的经验和坚实的科学背景。这种合作伙伴关系推动了EUonQOL将QOL信息转化为未来癌症护理政策和临床实践的变化的雄心。

EUonQoL aims to develop, pilot and validate the EUonQoL-Kit, a patient-driven, unified system for the assessment of quality of life (QoL) based on evaluations and preferences of cancer patients and survivors. The EUonQoL-Kit will be developed from a patient perspective, administered digitally, available in the EU27 and Associated countrieslanguages, and applicable in future, periodic surveysto contribute to the EU’s mission on cancer. At the core of the EUonQoL there isthe adoption of a multistakeholder, co-design methodology, engaging patient representatives, healthcare professionals, administrators, policymakers, and citizens in all project related activities. Existing QoL tools will be reviewed, scoping all relevant sources. This review will be used in the context of the codesign consensus with stakeholders’ and patients’ preferences to identify gaps and establish all QoL dimensions that are relevant from the perspectives of patients, clinicians, and society. A multidisciplinary researcher panel, composed by the most talented experts, will develop the EUonQoLKit that will be validated in a pilot survey using digital data collection within month 24 of the project. A total of 4,000 cancer patients and survivors will be enrolled through a network of EU cancer centers. An analysis of factors potentially impacting on cancer patients and survivors QoL, will also be performed. Implementation and exploitation strategies, as well as the linkage with other Cancer Mission projects and actions will be explored to develop future periodic surveys. EUonQoL is composed by research institutions, cancer centers, as well as scientific, professional, and patient representative organizations involved in cancer research, all with extensive experience and robust scientific background in the development of self-report QoL measures.This partnership fuels the ambition of EUonQoL to translate QoL information into future changes in cancer care policy and clinical practice.