Periodic Reporting for period 1 - EUonQoL (Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe)
Periodo di rendicontazione: 2023-01-01 al 2024-06-30
The EUonQoL project - Quality of life in Oncology: measuring what matters for cancer patients and survivors in Europe- has the overall objective of contributing to the progress of the EU Mission on Cancer, which aims to improve health-related quality of life (HRQoL) of patients with current or past cancer experience.
HRQoL is acknowledged as a key health outcome in cancer care, as it is a dynamic multidimensional concept reflecting how disease and treatment impact a patient’s perception of overall functioning and wellbeing. HRQoL can be optimally estimated through Patient Reported Outcome Measures (PROMs), i.e. self-assessment instruments such as questionnaires, designed to capture “what matters to patients”, as they collect any report that comes directly from the patient without interpretation by a clinician or anyone else.While PROMs are used extensively at the micro/individual patient level and in clinical research, they are still poorly implemented at the highest levels of health systems, where aggregated PROM data could inform the development of targeted health system interventions and evidence-based policymaking to best support the needs of cancer patients across the EU.
At present, European cancer policies and programs lack a comprehensive HRQoL assessment tool to be widely used across different healthcare systems and countries. The EUonQoL project represents an important step in this direction, taking up the challenge of designing, validating, and implementing a standardised PROM for HRQoL assessment (the EUonQoL-Kit), to ensure that the perspectives of patients at different stages of their disease trajectory could be systematically incorporated into future European cancer initiatives.
At the core of the EUonQoL there is the adoption of a participatory co-design methodology, engaging multiple stakeholders, such as patients and their caregivers, healthcare professionals, administrators, policymakers, and citizens in all project related activities. Notably, patients have collaborated as co-researchers to provide important insights into their preferences and priorities with the aim to increase the relevance and acceptability of the EUonQoL-Kit. Moreover, existing HRQoL questionnaires, item banks and databases have been reviewed with the purpose to include QoL dimensions not adequately covered by the tools available in the literature. Finally, the toolkit has been developed to meet all metrological requirements for scientific soundness and will be validated through its first large-scale application in a large European sample of about 4,000 cancer patients and survivors from 45 clinical centres located in 25 EU Member States and 7 Associated countries.
HRQoL is acknowledged as a key health outcome in cancer care, as it is a dynamic multidimensional concept reflecting how disease and treatment impact a patient’s perception of overall functioning and wellbeing. HRQoL can be optimally estimated through Patient Reported Outcome Measures (PROMs), i.e. self-assessment instruments such as questionnaires, designed to capture “what matters to patients”, as they collect any report that comes directly from the patient without interpretation by a clinician or anyone else.While PROMs are used extensively at the micro/individual patient level and in clinical research, they are still poorly implemented at the highest levels of health systems, where aggregated PROM data could inform the development of targeted health system interventions and evidence-based policymaking to best support the needs of cancer patients across the EU.
At present, European cancer policies and programs lack a comprehensive HRQoL assessment tool to be widely used across different healthcare systems and countries. The EUonQoL project represents an important step in this direction, taking up the challenge of designing, validating, and implementing a standardised PROM for HRQoL assessment (the EUonQoL-Kit), to ensure that the perspectives of patients at different stages of their disease trajectory could be systematically incorporated into future European cancer initiatives.
At the core of the EUonQoL there is the adoption of a participatory co-design methodology, engaging multiple stakeholders, such as patients and their caregivers, healthcare professionals, administrators, policymakers, and citizens in all project related activities. Notably, patients have collaborated as co-researchers to provide important insights into their preferences and priorities with the aim to increase the relevance and acceptability of the EUonQoL-Kit. Moreover, existing HRQoL questionnaires, item banks and databases have been reviewed with the purpose to include QoL dimensions not adequately covered by the tools available in the literature. Finally, the toolkit has been developed to meet all metrological requirements for scientific soundness and will be validated through its first large-scale application in a large European sample of about 4,000 cancer patients and survivors from 45 clinical centres located in 25 EU Member States and 7 Associated countries.
Figure 1 displays an overview and timeline of the main achievements for the period from month 1 (M1, January 2023) to month 18 (M18, June 2024). The activities mainly concerned Phase 1 of the EUonQoL project, i.e. the development and finalisation of the EUonQoL-Kit, and were carried out in synergy by WP4 (Development of the EUonQoL-Kit), WP3 (Review of existing HRQoL databases, measures & item libraries), , WP2 (Involvement of stakeholders and patients), WP5 (Cross-cultural determinants of the QoL and linguistic and cultural adaptation of EUonQoL-Kit), WP6 (Digital tools for data collection) and WP7 (EUonQoL-Kit Pilot survey). These activities led to a first version of the EUonQoL-Kit (V1), resulting from two systematic literature reviews, a mixed-method study (Delphi survey and patient interview data), and a consensus meeting also involving Stakeholder Board members and patient co-researchers from WP2 (Involvement of stakeholders and patients). EUonQoL-Kit V1 underwent usability testing in 5 countries to establish patients’ views and highlight areas for improvement. EUonQoL-Kit version 2 (V2) was finalised after two consortium meetings and a Stakeholder global forum public webinar, also aimed to start public engagement for future implementation.
In parallel to the development of the EuonQoL-Kit, a number of activities were carried out by WP7 in preparation for the validation of the new toolkit through its first large-scale application study in Europe (EuonQoL Phase 2), and by WP8 (Implementation and Exploitation) in preparation for its future use in the framework of the EU Mission on Cancer and other initiatives (EuonQoL Phase 3).
Dissemination and communication strategies (WP9), stakeholder participation and involvement (WP2), ethical oversight (WP1) and project coordination (WP10) were cross-cutting activities that underpinned this first period. They overlapped with the above activities in strong synergies and interdependencies due to the tight project timeline.
In parallel to the development of the EuonQoL-Kit, a number of activities were carried out by WP7 in preparation for the validation of the new toolkit through its first large-scale application study in Europe (EuonQoL Phase 2), and by WP8 (Implementation and Exploitation) in preparation for its future use in the framework of the EU Mission on Cancer and other initiatives (EuonQoL Phase 3).
Dissemination and communication strategies (WP9), stakeholder participation and involvement (WP2), ethical oversight (WP1) and project coordination (WP10) were cross-cutting activities that underpinned this first period. They overlapped with the above activities in strong synergies and interdependencies due to the tight project timeline.
EUonQoL’s research strategy and pathway is supporting the development of a HRQoL assessment tool with innovative features for reliable evaluation and comparison of different initiatives addressing cancer at the European level. Co-designed with patients to address their views and needs, translated and culturally adapted into several European languages, integrating both static and dynamic questionnaires to tailor items to individual patient disease stages, the EUonQoL-Kit will be a cornerstone in promoting patient-centred care at the European level in several important ways, ultimately resulting in improved cancer care strategies. To ensure future large-scale uptake and success of the EUonQoL-Kit, the dissemination and exploitation activities already in place and to be strengthened beyond the project period are essential. These activities involve a wide range of stakeholders (health care providers, scientific and clinical community, patients, caregivers, general public) to raise awareness of EUonQoL, and to promote wider synergies with other leading European initiatives relevant to the project.