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

EUonQoL：肿瘤学生活质量：衡量欧洲癌症患者和幸存者的重要因素

• 批准号: 10057589
• 金额: $ 39.81万
• 依托单位: UNIVERSITY OF LEEDS
• 依托单位国家: 英国
• 项目类别: EU-Funded
• 财政年份: 2023
• 资助国家: 英国
• 起止时间: 2023 至 无数据
• 项目状态: 未结题
• 来源: https://gtr.ukri.org/projects?ref=10057589
• 关键词: EUonQoL; Quality; Life; Oncology; measuring

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.

EUonQoL 旨在开发、试点和验证 EUonQoL-Kit，这是一个以患者为主导的统一系统，用于根据癌症患者和幸存者的评估和偏好来评估生活质量 (QoL)。患者观点，以数字方式管理，以欧盟 27 国和相关国家的语言提供，并适用于未来的定期调查，为欧盟的癌症使命做出贡献。这是 EUonQoL 的核心。是采用多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项目相关活动，并确定所有相关来源的范围。由最有才华的专家组成的多学科研究小组将与利益相关者和患者的偏好进行协同设计共识，以找出差距并建立所有相关的生活质量维度。 EUonQoLKit 将在该项目的 24 个月内使用数字数据收集进行试点调查，将通过欧盟癌症中心网络招募总共 4,000 名癌症患者和幸存者，对可能影响癌症患者和幸存者的因素进行分析。还将探索实施和开发策略，以及与其他癌症使命项目和行动的联系，以制定未来的定期调查，由研究机构、癌症中心组成。作为参与癌症研究的科学、专业和患者代表组织，所有组织在制定自我报告生活质量测量方面都拥有丰富的经验和强大的科学背景。这种伙伴关系激发了 EUonQoL 将生活质量信息转化为未来癌症护理政策变化的雄心和临床实践。