Development and pan-European validation of the EUonQoL-Kit for people living with and beyond cancer
O Garin, M Ferrer, L Caselli, C BrunelliAbstract
Background
Assessing quality of life in people living with and beyond cancer requires measures that are person-centred, cross-culturally valid, and applicable across European settings. EUonQoL (euonqol.eu) is a Mission Cancer funded project, aimed to co-create and validate a standardised European quality of life instrument for patients receiving active treatment, cancer survivors, and patients in need of palliative care, ensuring acceptability and psychometric robustness.
Methods
The EUonQoL-Kit was developed through a two-phase, multi-stakeholder co-design process. Phase 1 combined systematic literature reviews, a Delphi survey with patients and healthcare professionals, and semi-structured interviews in six European countries. This process resulted in a five-domain framework covering Physical health, Psychological wellbeing, Social health, Overall health, and Health care. Version 2 was translated and culturally adapted into 30 languages. In Phase 2, version 2 was validated in a multicentre pan-European survey conducted in 44 centres across 32 countries, including 4,302 participants from the three target populations. Both static and dynamic formats were assessed.
Results
The EUonQoL-Kit showed good acceptability, with high completion rates and low respondent burden, although some patients in palliative care required support. Psychometric analyses supported reliability, structural validity, concurrent validity, and test–retest reliability, with most scores exceeding accepted thresholds. Construct validity was supported by poorer quality of life outcomes in patients with more advanced disease and worse ECOG (Eastern Cooperative Oncology Group) status.
Conclusions
These findings supported the final consensus leading to the EUonQoL-Kit V3.