Sustainability of the EUonQoL-Kit: embedding cancer quality of life measurement in European policy
Abstract
Background: Quality of life is increasingly recognised as a central outcome in cancer care, as well as an indicator of cancer system performance alongside traditional metrics such as cancer survival rates. The EUonQoL project has developed a validated, person-centred toolkit, the EUonQoL-Kit, to enable standardised quality of life measurement across national healthcare institutions, research and cancer centres in Europe. As the project moves towards completion, ensuring its long-term sustainability and embedding in EU and national policy frameworks becomes a priority.
Methods: A strategic action plan for policy outreach and sustainability was developed, informed by the project’s scientific outputs and pilot results. Actions are structured around three levels: EU institutions, national policymakers, and patient and cancer communities. Engagement activities include targeted meetings with key European and international stakeholders, advocacy towards relevant policy frameworks, and multi-stakeholder coalition building.
Results: EU-level outreach has been directed at the European Commission (DG RTD and JRC), OECD, the European Network of Cancer Registries, and EU-funded cancer initiatives, with the goal of integrating the EUonQoL-Kit into ongoing cancer surveillance frameworks. National engagement is targeting countries currently revising National Cancer Control Plans. Community-level actions are empowering patient organisations to advocate for quality of life measurement as a standard of cancer care.
Conclusions: A coordinated policy outreach strategy is essential to ensure that the EUonQoL-Kit moves from a research tool to a sustained European infrastructure for quality of life monitoring. Embedding the Kit in existing EU and national policy frameworks offers a concrete pathway to improve person-centred cancer policies across Europe.
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BibTeX
@article{eni2026sustainability,
title = {{Sustainability of the EUonQoL-Kit: embedding cancer quality of life measurement in European policy}},
author = {A Eni and N Couespel},
journal = {The European Journal of Public Health},
year = {2026},
month = oct,
doi = {10.1093/eurpub/ckag169.150},
url = {https://doi.org/10.1093/eurpub/ckag169.150},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - Sustainability of the EUonQoL-Kit: embedding cancer quality of life measurement in European policy
AU - A Eni
AU - N Couespel
PY - 2026
DA - 2026/10/01
JO - The European Journal of Public Health
DO - 10.1093/eurpub/ckag169.150
UR - https://doi.org/10.1093/eurpub/ckag169.150
AB - Background: Quality of life is increasingly recognised as a central outcome in cancer care, as well as an indicator of cancer system performance alongside traditional metrics such as cancer survival rates. The EUonQoL project has developed a validated, person-centred toolkit, the EUonQoL-Kit, to enable standardised quality of life measurement across national healthcare institutions, research and cancer centres in Europe. As the project moves towards completion, ensuring its long-term sustainability and embedding in EU and national policy frameworks becomes a priority. Methods: A strategic action plan for policy outreach and sustainability was developed, informed by the project’s scientific outputs and pilot results. Actions are structured around three levels: EU institutions, national policymakers, and patient and cancer communities. Engagement activities include targeted meetings with key European and international stakeholders, advocacy towards relevant policy frameworks, and multi-stakeholder coalition building. Results: EU-level outreach has been directed at the European Commission (DG RTD and JRC), OECD, the European Network of Cancer Registries, and EU-funded cancer initiatives, with the goal of integrating the EUonQoL-Kit into ongoing cancer surveillance frameworks. National engagement is targeting countries currently revising National Cancer Control Plans. Community-level actions are empowering patient organisations to advocate for quality of life measurement as a standard of cancer care. Conclusions: A coordinated policy outreach strategy is essential to ensure that the EUonQoL-Kit moves from a research tool to a sustained European infrastructure for quality of life monitoring. Embedding the Kit in existing EU and national policy frameworks offers a concrete pathway to improve person-centred cancer policies across Europe.
SN - 1101-1262
SN - 1464-360X
ER -