Quality of Life in Oncology
Quality of Life in Oncology
Methodology
EUonQoL adopts a multi-stakeholder co-design methodology throughout the project. This participatory approach takes several forms:
- Patients and their caregivers act as co-researchers in all interconnected Work Packages and project phases.
- Healthcare providers, quality of life (QoL) researchers, administrators and policymakers, as well as citizens and patient representative associations are involved in advising the steering group and stakeholder board, as well as promoting data collection and disseminating study results.
Project Phases
Phase 1: EUonQoL-Kit co-creation
This phase is an iterative process, including:
- Review and analysis of existing QoL questionnaires, for gap identification.
- Collection of patients’ preferences and priorities regarding QoL, through both surveys and interviews.
- Development of the EUonQoL-Kit static and dynamic versions to be applied in different stages of the cancer disease trajectory: patients in active treatment, survivors, and patients in palliative care.
- Translation and cultural adaptation of the EUonQoL-Kit across European languages.
What are static and dynamic versions of EUonQoL-Kit?
In static questionnaires, the same set of questions is proposed to all respondents. This implies that patients are asked questions that may not be relevant to their health condition. As an example, if unable to walk a short distance, there is no reason to ask if the patient can walk for a long distance.
In dynamic questionnaires, questions are automatically selected by an underlying software based on previous responses, while the patient is completing the questionnaire. Therefore, if unable to walk a short distance, patients will not be asked if they can walk for a long distance.
EUonQoL-Kit dynamic version is based on Computer Adaptive Testing, a methodological approach that allows a more precise and tailored.
Phase 2: EUonQoL-Kit validation and data analysis
This phase aims at:
- Performing the psychometric validation of EUonQoL-Kit, through its first large-scale application across Europe. The new toolkit will be administered to a large sample of cancer patients and survivors from 46 European oncological centres, for an overall sample size up to 4,000 individuals.
- Providing preliminary estimates of QoL across different European countries.
- Analysing socio-demographic and clinical factors, as well as country- and healthcare system-related determinants, potentially associated to QoL.
What is psychometric validation?
Psychometric validation of a newly developed questionnaire involves collecting and analysing data from a specific sample of individuals who have completed it, to assess its validity and reliability.
The EUonQoL-Kit is valid if it measures what it is supposed to measure (QoL dimensions) and performs as it is designed to perform (it applies to cancer patients at different stages of their disease trajectory).
The EUonQoL-Kit is reliable if its measurements are consistent over time, under stable conditions.
Phase 3: EUonQoL-Kit dissemination and exploitation
This phase aims at:
- Setting up guidelines for appropriate EUonQoL-Kit implementation and application.
- Promoting the use of the EUonQoL-Kit in future pan-European surveys.
- Launching spontaneous QoL data collection using the EUonQoL-Kit to increase the volume and coverage of patient-reported QoL outcome measures in European countries.
- Establishing a strong network with stakeholders to consolidate EUonQoL-Kit dissemination strategies initiated with the project.