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

Cancer data registration is highly important for planning and evaluating cancer control activities, contributing to cancer epidemiology, and consequently improving the individual care and enhancing the quality of life of cancer patients. The EUonQoL project aims to develop a novel digital system called the EUonQoL-Kit to collect feedback evaluations from cancer patients and assess their quality of life based on this feedback. The EUonQoL-Kit is intended to be developed from a patient perspective to contribute to the European Union's cancer mission. The program, which will be implemented digitally, is planned to be available in the languages of the European Union member states and other associated countries, and to operate on a periodic survey system.

EUonQoL adopts a multi-stakeholder co-design methodology across all project-related activities by engaging individuals from diverse groups, such as patient representatives, healthcare professionals, administrators, and citizens. Within the scope of the project, QoL (Quality of Life) dimensions will be established based on the perspectives of patients, clinicians, and society. These data will then be utilized within the context of a co-design consensus aligned with stakeholder and patient preferences. Through this approach, it will also be possible to conduct an analysis of the factors that potentially affect the quality of life of cancer patients.

EUonQoL is composed of research institutions, cancer centres, and scientific, professional, and patient representative organizations involved in cancer research. In summary, 'Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe – EUonQoL,' which also includes Türkiye Cancer Institute, aims to establish a data repository and serve the purpose of translating these data into future changes in cancer care policy and clinical practice.