EUonQoL is patient-centred toolkit to measure and improve well-being
The journey through cancer is not just about battling the disease itself; it’s also about navigating the profound impact it has on every aspect of life. From physical pain to emotional distress, cancer patients and survivors often face challenges that go beyond medical treatment. Recognising this, the EUonQoL project, funded by the European Union under the Horizon Europe programme, is working to develop a groundbreaking tool to measure and improve the quality of life (QoL) for those affected by cancer. Running from January 2023 to December 2026, with a budget of €10.6 million, the project is coordinated by the Fondazione IRCCS Istituto Nazionale dei Tumori in Italy and involves key partners such as Region Hovedstaden (Denmark), Institut Gustave Roussy (France), and the European Organisation for Research and Treatment of Cancer (EORTC).
Quality of life
At the heart of EUonQoL is the development of the European Oncology Quality of Life Toolkit (EUonQoL-Kit), a unified, patient-centred tool designed to assess QoL across different stages of cancer care. Unlike traditional measures, this toolkit is co-created with patients, caregivers, healthcare professionals, and policymakers, ensuring it reflects the real needs and priorities of those living with cancer.
The EUonQoL-Kit is not just another questionnaire; it’s a dynamic, multilingual, and digitally administered tool that adapts to the unique circumstances of each patient. For example, its dynamic version uses Computer Adaptive Testing (CAT), which tailors questions based on previous responses, ensuring that patients only answer what is relevant to their situation. This innovative approach makes the toolkit more precise and less burdensome for users.
A collaborative journey
The project is divided into three key phases. The first phase focuses on co-creating the toolkit through an iterative process that includes reviewing existing QoL measures, gathering patient preferences, and developing both static and dynamic versions of the toolkit. These versions are designed to address the needs of patients in active treatment, survivors, and those in palliative care.
In the second phase, the toolkit undergoes rigorous psychometric validation across a diverse sample of up to 4,000 cancer patients and survivors from 46 European oncological centres. This large-scale pilot will not only validate the toolkit but also provide valuable insights into how QoL varies across different countries and healthcare systems.
The final phase focuses on dissemination and exploitation, ensuring the toolkit is widely adopted across Europe. Guidelines will be established for its implementation, and a strong network of stakeholders will promote its use in future surveys and policy evaluations.
Why this matters
Quality of life is one of the three pillars of the EU Mission on Cancer, and the EUonQoL-Kit is a critical step toward making it a central focus of cancer care. By capturing patients’ perspectives on physical, emotional, and social well-being, the toolkit will help shape clinical practices, healthcare policies, and support systems that truly meet the needs of cancer patients and survivors.
24 partners from Europe
EUonQoL brings together a diverse consortium of 24 partners from across Europe, including research institutions, hospitals, patient associations, and policymakers. This collaborative effort ensures that the toolkit is not only scientifically robust but also practical and impactful.
By focusing on what truly matters to cancer patients and survivors, EUonQoL is paving the way for a future where quality of life is at the heart of cancer care. Through its innovative approach and commitment to patient-centred solutions, the project is set to make a lasting difference in the lives of millions across Europe, ensuring that no one faces cancer alone.
