EUonQoL- Developing the toolkit: WP4
Research type
Research Study
Full title
EUonQoL- Developing the toolkit: Patient preferences and priorities for quality of life domains across the cancer care continuum
IRAS ID
327572
Contact name
Alexandra Gilbert
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
The improvement or preservation of quality of life (QoL) is one of the three pillars of the EU Mission on Cancer, which underpins the needs of patients from cancer diagnosis across treatment, survivorship, and advanced terminal stages of non-curable cases. The burden of cancer on quality of life is well recognised, while clinical trials and real-world data show the positive effects of routine QoL assessment on patient wellbeing and use of healthcare resources. However, full implementation of QoL assessment in routine oncology practice is not yet part of standard of care. Currently, health care systems do not take into consideration QoL measures when devising clinical, societal, and healthcare policymaking systems.
The research outlined in this application forms part of a larger, EU funded programme which aims to develop, pilot and validate the European Oncology Quality of Life toolkit (EUonQoL-Kit), which will be a unified system for the assessment of QoL. The programme aims to deliver the toolkit within 2 years, via a several work packages running in parallel.
The overall aim of this work package is to develop a questionnaire toolkit to assess QoL across the whole cancer continuum of adult patients within Europe and to understand patient views on the existing QoL-related constructs, engaging them to develop new items/measures to fill-in the gaps in existing questionnaires using existing frameworks to develop the toolkit.
This effort will involve an iterative process carried out in parallel across six countries (UK, The Netherlands, France, Denmark, Germany & Italy) using mixed methods methodology to explore patient views and preferences through patient interviews and a Delphi survey. A multi-stakeholder consensus meeting will be conducted to amalgamate summarised results from the patient interviews and Delphi survey to create a draft EUonQoL-Kit. The draft toolkit will then be tested as part of a usability study. The usability study will involve cognitive interviews with groups of patients from each cancer group in the same six countries where the patient interviews were completed. This study will determine the appropriate wording of questions (particularly for cultural literacy), ii) interpretation and comprehension of questions, iii) comprehensibility of the response scale, iv) difficulty of choosing a response and v) responses to the recall period.
REC name
London - Surrey Borders Research Ethics Committee
REC reference
23/PR/0739
Date of REC Opinion
10 Jul 2023
REC opinion
Favourable Opinion