I.3. Scientific session: Measuring what matters for people living with or beyond cancer in Europe: the EUonQoL-Kit
Abstract
Improving quality of life for people living with or beyond cancer is a central objective of key EU initiatives against cancer, including Europe’s Beating Cancer Plan and the EU Cancer Mission. Beyond survival and clinical outcomes, understanding and monitoring physical, psychological, existential, and social wellbeing is essential for person centred, equitable and sustainable cancer care, research, and policies, yet seldom routinely assessed at the population level. The EUonQoL project is aimed to fill this gap by developing and implementing a harmonised, policy relevant set of self-reported questionnaires for monitoring quality of life among cancer patients and survivors across Europe. This workshop brings together five complementary presentations that reflect the full scope of, and results achieved in, the EUonQoL project. The first presentation describes achievements in the development and validation of the EUonQoL Kit, including its conceptual framework, indicator selection and validation results ensuring scientific robustness and cross language equivalence. The second presentation provides a detailed description of the EUonQoL Kit and the new digital Survey Hub, highlighting functionalities, accessibility, and opportunities for a scalable quality of life data collection at population level in Europe. The third presentation focuses on Patient and Public Involvement (PPI) within the EUonQoL project, illustrating how the perspectives and lived experiences of cancer patients, survivors and family caregivers were systematically integrated to strengthen relevance, transparency, and legitimacy. The fourth presentation explores the implementation of the EUonQoL Kit, including potential applications and practical considerations for embedding quality of life monitoring into cancer surveillance and policy evaluation at local, national and EU levels. Finally, the workshop discusses sustainability and EU policy outreach, highlighting alignment with EU cancer strategies, stakeholder engagement, and pathways for long term uptake beyond the project’s lifetime. This workshop is relevant for public health researchers, cancer care professionals, policymakers, and stakeholders seeking to advance quality of life as a core outcome of cancer policy and public health action across Europe.
Key messages: • Quality of life is increasingly recognised as a central outcome in cancer care, yet Europe lacks a standard, cross-country approach to measure it in routine policy; the EUonQoL Kit addresses this gap.
• A coordinated, multi-level implementation and outreach strategy is essential to ensure sustainability of the EUonQoL-Kit and to advance person-centred cancer care, research, and policy across Europe.
Related
- M.2. Scientific session: Mind matters in maternity care: cross-country evidence on perinatal mental health (IMAgiNE Study)
- G.11. Scientific session: Climate change and environmental impacts on mental health: protecting people, services and workforce
- Development and pan-European validation of the EUonQoL-Kit for people living with and beyond cancer
- Measuring What Matters: Development of the TRACE Measure (Trauma, Resilience and Adversity in Cultural Experiences)
- “The way I am being treated matters more to me than the TB itself”: experiences of stigma in healthcare settings among people with drug-resistant tuberculosis in Lagos, Nigeria: a qualitative study
BibTeX
@article{nivelnetherlands2026scientific,
title = {{I.3. Scientific session: Measuring what matters for people living with or beyond cancer in Europe: the EUonQoL-Kit}},
author = {Nivel (Netherlands), Fondazione IRCCS Istituto Nazionale dei Tumori (Italy), Hospital del Mar Research Institute (Spain), Oslo University Hospital (Norway), European Cancer Organisation and Iris van der Heide and Cinzia Brunelli},
journal = {The European Journal of Public Health},
year = {2026},
month = oct,
doi = {10.1093/eurpub/ckag169.145},
url = {https://doi.org/10.1093/eurpub/ckag169.145},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - I.3. Scientific session: Measuring what matters for people living with or beyond cancer in Europe: the EUonQoL-Kit
AU - Nivel (Netherlands), Fondazione IRCCS Istituto Nazionale dei Tumori (Italy), Hospital del Mar Research Institute (Spain), Oslo University Hospital (Norway), European Cancer Organisation
AU - Iris van der Heide
AU - Cinzia Brunelli
PY - 2026
DA - 2026/10/01
JO - The European Journal of Public Health
DO - 10.1093/eurpub/ckag169.145
UR - https://doi.org/10.1093/eurpub/ckag169.145
AB - Improving quality of life for people living with or beyond cancer is a central objective of key EU initiatives against cancer, including Europe’s Beating Cancer Plan and the EU Cancer Mission. Beyond survival and clinical outcomes, understanding and monitoring physical, psychological, existential, and social wellbeing is essential for person centred, equitable and sustainable cancer care, research, and policies, yet seldom routinely assessed at the population level. The EUonQoL project is aimed to fill this gap by developing and implementing a harmonised, policy relevant set of self-reported questionnaires for monitoring quality of life among cancer patients and survivors across Europe. This workshop brings together five complementary presentations that reflect the full scope of, and results achieved in, the EUonQoL project. The first presentation describes achievements in the development and validation of the EUonQoL Kit, including its conceptual framework, indicator selection and validation results ensuring scientific robustness and cross language equivalence. The second presentation provides a detailed description of the EUonQoL Kit and the new digital Survey Hub, highlighting functionalities, accessibility, and opportunities for a scalable quality of life data collection at population level in Europe. The third presentation focuses on Patient and Public Involvement (PPI) within the EUonQoL project, illustrating how the perspectives and lived experiences of cancer patients, survivors and family caregivers were systematically integrated to strengthen relevance, transparency, and legitimacy. The fourth presentation explores the implementation of the EUonQoL Kit, including potential applications and practical considerations for embedding quality of life monitoring into cancer surveillance and policy evaluation at local, national and EU levels. Finally, the workshop discusses sustainability and EU policy outreach, highlighting alignment with EU cancer strategies, stakeholder engagement, and pathways for long term uptake beyond the project’s lifetime. This workshop is relevant for public health researchers, cancer care professionals, policymakers, and stakeholders seeking to advance quality of life as a core outcome of cancer policy and public health action across Europe. Key messages: • Quality of life is increasingly recognised as a central outcome in cancer care, yet Europe lacks a standard, cross-country approach to measure it in routine policy; the EUonQoL Kit addresses this gap. • A coordinated, multi-level implementation and outreach strategy is essential to ensure sustainability of the EUonQoL-Kit and to advance person-centred cancer care, research, and policy across Europe.
SN - 1101-1262
SN - 1464-360X
ER -