Sustainability of the EUonQoL-Kit: embedding cancer quality of life measurement in European policy
A Eni, N CouespelAbstract
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.