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

Project start date: January 2022

Anticipated end date: July 2025

Funding: The Horizon Europe programme


The improvement or preservation of quality of life (QoL) is one of the three pillars of the EU Mission on Cancer, which underpins the needs of patients from cancer diagnosis across treatment, survivorship, and advanced terminal stages of non-curable cases. The burden of cancer on quality of life is well recognised, while clinical trials and real-world data show the positive effects of routine QoL assessment on patient wellbeing and use of healthcare resources. However, full application of QoL assessment in routine oncology practice is not yet part of standard of care. Currently, healthcare systems do not take into consideration QoL measures when devising clinical, societal, and healthcare policymaking systems.

The overall project aims to develop, pilot and validate the European Oncology Quality of Life toolkit (EUonQoL-Kit), a patient co-researcher driven, unified system for the assessment of quality of life (QoL) based on the evaluations and preferences of cancer patients and survivors. The EUonQoL-Kit will be developed from the patient perspective, administered digitally, available in all 27 European Union (EU) and associated countries languages, applicable for use in future, periodic surveys to contribute to the EU’s mission on cancer and inform health policy.

Our team is leading Workpackage 4 (WP4) which aims to develop the toolkit using mixed methods and then present the results of initial usability testing. The toolkit will then be pilot testing in WP7 across 45 centres across the EU.

Aims and Objectives

The overall aim of this project is to develop a questionnaire toolkit called the EUonQoL-Kit intended to assess quality of life (QOL) across the whole cancer continuum of patients within Europe. The toolkit will assess QOL in three target groups of patients:

(A) receiving active treatment (curative and non-curative)

(B) cancer survivors for patients aged 18 years and older

(C) receiving palliative care

This stage of the project aims to develop a draft of the EUonQoL-Kit for pilot testing. This study uses co-design, working with patients and survivors as co-researchers to explore patient views on the coverage of QOL items selected from the initial phases of WP4 in each part of the cancer continuum.

If you have any questions regarding this project, please contact Christopher Bedding at c.bedding@leeds.ac.uk.

Study Team

Dr Christopher Bedding

Dr Emma Nicklin

Dr Alexandra Gilbert

Professor Galina Velikova