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

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 countries languages, and applicable in future, periodic surveys to contribute to the EU’s mission on cancer. At the core of the EUonQoL there is the 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 panel of leading experts will develop the EUonQoL-Kit to be validated in a digital pilot survey of 4,000 patients and survivors enrolled through a network of EU cancer centres. An analysis of factors potentially impacting QoL, will also be performed.

EUonQoL will explore strategies for the implementation and exploitation of the EUonQoL-Kit, while coordinating a QoL-Patient-Centred Care (PCC) cluster across Cancer Mission projects to develop a system-wide PCC policy, built on sustained stakeholder engagement and targeted outreach, as the basis for routine QoL data collection.

EUonQoL is composed of research institutions, cancer centres, as well as scientific, professional, and patient representative organizations involved in cancer research, all with extensive experience and robust scientific background in developing self-reported QoL measures. This partnership fuels the ambition of EUonQoL to translate QoL data into future changes in cancer care policy and clinical practice.