The EUonQoL project - Quality of life in Oncology: measuring what matters for cancer patients and survivors in Europe- has the overall objective of contributing to the progress of the EU Mission on Cancer, which aims to improve health-related quality of life (HRQoL) of patients with current or past cancer experience.
HRQoL is acknowledged as a key health outcome in cancer care, as it is a dynamic multidimensional concept reflecting how disease and treatment impact a patient’s perception of overall functioning and wellbeing. HRQoL can be optimally estimated through Patient Reported Outcome Measures (PROMs), i.e. self-assessment instruments such as questionnaires, designed to capture “what matters to patients”, as they collect any report that comes directly from the patient without interpretation by a clinician or anyone else.While PROMs are used extensively at the micro/individual patient level and in clinical research, they are still poorly implemented at the highest levels of health systems, where aggregated PROM data could inform the development of targeted health system interventions and evidence-based policymaking to best support the needs of cancer patients across the EU.
At present, European cancer policies and programs lack a comprehensive HRQoL assessment tool to be widely used across different healthcare systems and countries. The EUonQoL project represents an important step in this direction, taking up the challenge of designing, validating, and implementing a standardised PROM for HRQoL assessment (the EUonQoL-Kit), to ensure that the perspectives of patients at different stages of their disease trajectory could be systematically incorporated into future European cancer initiatives.
At the core of the EUonQoL there is the adoption of a participatory co-design methodology, engaging multiple stakeholders, such as patients and their caregivers, healthcare professionals, administrators, policymakers, and citizens in all project related activities. Notably, patients have collaborated as co-researchers to provide important insights into their preferences and priorities with the aim to increase the relevance and acceptability of the EUonQoL-Kit. Moreover, existing HRQoL questionnaires, item banks and databases have been reviewed with the purpose to include QoL dimensions not adequately covered by the tools available in the literature. Finally, the toolkit has been developed to meet all metrological requirements for scientific soundness and will be validated through its first large-scale application in a large European sample of about 4,000 cancer patients and survivors from 45 clinical centres located in 25 EU Member States and 7 Associated countries.
