Developing a toolkit to assess quality of life in cancer patients and survivors across Europe: EUonQOL-kit
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All Authors
Nicklin, Emma
Bedding, Christopher
Gillanders, Emma
Franzoi, Maria Alice
Martin, Elise
Bouleuc, Carole
Scacciati, Bianca
Alfieri, Sara
Gangeri, Laura
Caselli, Luana
LTHT Author
LTHT Department
Non Medic
Publication Date
2025
Item Type
Conference Abstract
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Abstract
Background/Aim: The EU-funded project “Quality of Life in Oncology: measuring what matters to cancer patients and survivors in Europe (EUonQoL)” aims to develop, validate and disseminate the EUonQoL-Kit, a patient-centred toolkit for the assessment of QoL in cancer patients and survivors.
Methods: The EUonQoL-Kit was developed through an iterative process of several mixed methods steps, with co-researcher involvement throughout. Existing QoL frameworks, and results from two systematic reviews structured the development process. During development, data was collected in six countries (UK, the Netherlands, France, Germany, Italy and Denmark). Patient interviews (n=75), and a Delphi study (n=155, 96 patients/survivors and 59 healthcare professionals) were used to create the EUonQoL conceptual framework and generate content for EUonQoL-Kit v1, which was evaluated via a usability study. Triangulated data and consensus methodology supported decision-making to produce EUonQoL-Kit v2. The psychometric properties of EUonQoL-Kit v2 are currently being assessed in a large scale, multicentre cross-sectional study.
Results: The EUonQoL-Kit consists of six questionnaires specifically designed for three target groups (A, Patients in active treatment; B, Survivors; C, Patients in palliative care), all available in a static and dynamic versions (applying Computer Adaptive Testing). The toolkit covers four conceptual domains relevant to patient reported outcomes(physical, psychological, social and overall health) and one domain relating to patient reported experience (healthcare experience). The total number of items in EUonQoL v2 range from 44 to 50 in the static version and from 78 to 82 in the dynamic version (shorter questionnaires are for patients in palliative care, group C). Presently, over 4000 patients and survivors have tested the EUonQoL-Kit v2 in 27 languages across 45 clinical sites, in 32 countries. Psychometric analysis is ongoing.
Conclusions: The EUonQoL-Kit is a novel toolkit developed to assess QoL across the cancer continuum, which will inform future cancer programs and policies within Europe.