European Oncology Quality of Life toolkit and Survey Hub: integrated tools to map quality of life
C Brunelli, L Caselli, S Iadecola, M Ferrer, O Garin, M Grønvold, MA PetersenAbstract
Background
The EUonQoL-Kit is a novel patient-reported outcome measure developed as the core result of the EUonQoL project. The Kit’s composition and structure are presented, alongside the Survey Hub, supporting its rollout across Europe.
Methods
The Kit was co-created with patients and validated in 30 EU languages via a pan-European survey. Findings on psychometrics and acceptability were reviewed across multiple consortium meetings informing iterative refinements to item inclusion, response options, and overall structure based on multi-level input. This process led to the current version (V3) of the Kit. In parallel, a user-friendly data collection e-platform (Survey Hub) was co-designed with stakeholders.
Results
The EUonQoL-Kit V3 includes 8 questionnaires: 6 population-specific (active treatment, survivors, palliative care), capturing quality of life aspects uniquely relevant to each population while remaining relatively brief (37-43 items), and 2 population-independent (for unknown or difficult-to-classify patient population), prioritising precision (44 items). The questionnaires are available in both static (fixed item sets) and dynamic (adaptive item selection) versions and cover 5 quality of life domains (physical, psychological, social, overall health, and health care). The Kit, complemented by optional questions on respondent characteristics, is administered through the Survey Hub, a webapp allowing harmonised, scalable, multilingual quality of life data collection, extraction, and visualisation, available under a no-fee licensing model for academic/non-profit use.
Conclusions
The EUonQoL-Kit and Survey Hub are integrated tools for key stakeholders, including health authorities, patient associations, research institutions, and the general public. By enabling harmonised quality of life mapping across European cancer populations and settings, they facilitate benchmarking and identification of disparities.