Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe
Fondazione IRCCS Istituto Nazionale dei Tumori (Milano)
Alleanza Contro il Cancro, IFO Istituti Fisioterapici Ospedalieri, Istituto Nazionale Tumori Fondazione Pascale - Affiliated Entities
48 months

EUonQoL aims to develop, pilot and validate the EUonQoL-Kit, a patient-driven, unified system for the assessment of quality of life (QoL) based on evaluations and preferences of cancer patients and survivors.
The EUonQoL-Kit will be developed from a patient perspective, administered digitally, available in the EU27 and Associated countries languages, and applicable in future, periodic surveys to contribute to the EU’s Cancer Mission.

At the core of the EUonQoL there is the adoption of a multistakeholder, co-design methodology, engaging patient representatives, healthcare professionals, administrators, policymakers, and citizens in all project related activities.
Existing QoL tools will be reviewed, scoping all relevant sources.
This review will be used in the context of the co-design consensus with stakeholders’ and patients’ preferences to identify gaps and establish all QoL dimensions that are relevant from the perspectives of patients, clinicians, and society.

A multidisciplinary researcher panel, composed by the most talented experts, will develop the EUonQoL-Kit that will be validated in a pilot survey using digital data collection within month 24 of the project.
A total of 4,000 cancer patients and survivors will be enrolled through a network of EU cancer centers. An analysis of factors potentially impacting on cancer patients and survivors QoL, will also be performed.
Implementation and exploitation strategies, as well as the linkage with other Cancer Mission projects and actions will be explored to develop future periodic surveys.

EUonQoL is composed by research institutions, cancer centres, as well as scientific, professional, and patient representative organisations, all with extensive experience and robust scientific background in the development of self-report QoL measures.
This partnership fuels the ambition of EUonQoL to translate QoL information into future changes in cancer care policy and clinical practice.

DIGICORE leads the WP6: Digital tools for data collection and the participants involved in this WP are:

  • Region Hovedstaden - Hillerød
  • Fondazione IRCCS Istituto Nazionale dei Tumori - Milan
  • European Institute of Oncology - Milan
  • European Cancer Organisation - Brussels
  • Istituto Nazionale Tumori G. Pascale - Naples
  • Alleanza Contro il Cancro - Italy
  • Istituto Tumori Regina Elena - Rome
  • Stichting Nederlands Instituut voor Onderzoek van de Gezondheidszorg – Utrecht

For further information on the DIGICORE participation to EUonQoL please click here