Asking the Right Questions: Creating a Questionnaire to Assess Quality of Life in Cancer Patients

A Stakeholder Forum for the EUonQoL project: measuring what matters for cancer patients in Europe.

 

Background

 

The improvement or preservation of quality of life (QoL) is one of the three pillars of the European Commission’s Mission on Cancer; one of its core principles being to take the needs of patients into consideration, throughout all the stages of the disease, from cancer diagnosis to treatment, and in some cases the advanced terminal stages of non-curable cases.

 

QoL assessment in a healthcare setting is of extreme relevance and can be done via Patient-Reported Outcome Measures (PROMs), which are self-reporting questionnaires capturing the patients’ perspective on their own health in terms of physical symptoms, functional status, emotional wellbeing, and role functioning. In a word, this enables the measurement of the quality of life associated with their disease or treatments. Nevertheless, full implementation of QoL assessment in routine oncology practice is not yet part of standard of care and health care systems, as cancer control programs do not take into consideration quality of life measures when devising clinical, societal, and healthcare policymaking systems.

 

 

The overall objectives of the EUonQoL Project

 

The Project aims at developing, piloting, validating, and disseminating the European Oncology Quality of Life toolkit (EUonQoL-Kit) amongst European cancer patients, through an innovative set of questionnaires, specifically designed for the self-assessment of quality of life at different disease phases.

 

 

Why is this Stakeholder Forum important for the EUonQoL project?

 

The creation of a questionnaire on quality of life at a European level is a novel and one-of-a-kind opportunity; stakeholders, policymakers and co-researchers will have the chance to contribute to its creation during the design and development phase through this forum. A high-level report will be issued following the forum to capture the main points of the discussions and to facilitate drawing conclusions and further connections.

12 December 2023 15:00 - 17:00 CET

Virtual

Programme

 

15:00 – 15:10 Welcome and Introduction 

Welcome and protocol for the event.

Norbert Couespel, Senior coordinator - Policy research & EU projects, European Cancer Organisation

 

15:10 – 15:20 Presentation of the EUonQoL Project and its relevance
  • Detailed explanation of the project key findings stemming from undergoing research.
  • The expected aim and outcomes for the implementation of the EUonQoL kit in Europe.
  • The dissemination goals.

Cinzia Brunelli, EUonQoL project coordinator.

 

15:20- 15:30 Presentation of the questionnaire development process and methodology

Galina Velikova, Medical Oncologist, University of Leeds and Leeds Teaching Hospital (UK)

 

15:30 – 16:15 Break-out room discussion based on the questionnaire

15:30 – 15:40: Introduction to the break-out room, presentation of the evidence and the questionnaire categories.

15:40 – 16:15: Discussion – using a virtual Miro board to record contributions.

  1. Social health
    Esther de Jongh, PhD student, Netherlands Cancer Institute
  2. Overall health & healthcare
    Anne Brédart, Psychologist, Institut Curie, and Member, European Organisation For Research And Treatment Of Cancer (EORTC) Quality of Life Group
  3. Psychological wellbeing
    Augusto Caraceni, Professor of Palliative Medicine, Università degli Studi di Milano
  4. Physical Health
    Galina Velikova, Medical Oncologist, University of Leeds and Leeds Teaching Hospital (UK)
    Christopher Bedding, Researcher for Patient Centred Outcomes, Leeds Cancer Centre (UK)

 

16:15 – 16:30 Common ground on discussion points from break-out rooms

Collecting feedback from each breakout room and presenting to the wider audience.

 

16:30 – 16:55 Building synergies with other EU projects
  • Fostering collaboration to avoid duplication and maximise impact
  • Ensuring the alignment of EUonQol with other major EU initiatives and projects

Panel discussion moderated by Stein Kaasa, Professor of Palliative Medicine and Head of Department of Oncology, Oslo University Hospital

  1. Cancer inequalities Registry
    Magdalena Stepien, Project Leader, European Commission Knowledge Centre on Cancer and EU Cancer Inequalities Registry.
  2. smartCARE
    Jack Latteur, smartCARE project officer, ECO.
  3. MyPath

    Tonje Lundeby, Senior researcher, Oslo University Hospital.

 

16:55 – 17:00 Conclusions and next steps

 

Speakers

  • Cinzia Brunelli Chairperson, Cancer Outcome Research Working Group, Organization of European Cancer Institutes (OECI)
  • Galina Velikova Medical Oncologist, University of Leeds and Leeds Teaching Hospitals (UK)
  • Stein Kaasa Professor of Palliative Medicine and Head of Department of Oncology, Oslo University Hospital
  • Magdalena Stepien Project Leader, European Commission Knowledge Centre on Cancer and EU Cancer Inequalities Registry
  • Anne Brédart Psychologist, Institut Curie, and Member, European Organisation For Research And Treatment Of Cancer (EORTC) Quality of Life Group
  • Augusto Caraceni Professor of Palliative Medicine, Università degli Studi di Milano
show all speakers (11)

Speakers

  • Cinzia Brunelli Chairperson, Cancer Outcome Research Working Group, Organization of European Cancer Institutes (OECI)
  • Galina Velikova Medical Oncologist, University of Leeds and Leeds Teaching Hospitals (UK)
  • Stein Kaasa Professor of Palliative Medicine and Head of Department of Oncology, Oslo University Hospital
  • Magdalena Stepien Project Leader, European Commission Knowledge Centre on Cancer and EU Cancer Inequalities Registry
  • Anne Brédart Psychologist, Institut Curie, and Member, European Organisation For Research And Treatment Of Cancer (EORTC) Quality of Life Group
  • Augusto Caraceni Professor of Palliative Medicine, Università degli Studi di Milano
show all speakers (11)
  • Cinzia Brunelli Chairperson, Cancer Outcome Research Working Group, Organization of European Cancer Institutes (OECI) Read Bio
  • Galina Velikova Medical Oncologist, University of Leeds and Leeds Teaching Hospitals (UK) Read Bio
  • Stein Kaasa Professor of Palliative Medicine and Head of Department of Oncology, Oslo University Hospital Read Bio
  • Magdalena Stepien Project Leader, European Commission Knowledge Centre on Cancer and EU Cancer Inequalities Registry Read Bio
  • Anne Brédart Psychologist, Institut Curie, and Member, European Organisation For Research And Treatment Of Cancer (EORTC) Quality of Life Group Read Bio
  • Augusto Caraceni Professor of Palliative Medicine, Università degli Studi di Milano Read Bio
  • Esther De Jongh PhD student, Netherlands Cancer Institute Read Bio
  • Christopher Bedding Researcher for Patient Centred Outcomes, Leeds Cancer Centre (UK) Read Bio
  • Tonje Lundeby Senior Researcher, Oslo University Hospital. Read Bio
  • Norbert Couespel SENIOR COORDINATOR - POLICY RESEARCH & EU PROJECTS, European Cancer Organisation
  • Jack Latteur EU PROJECTS OFFICER, EUROPEAN CANCER ORGANISATION

Speakers

  • Cinzia Brunelli Chairperson, Cancer Outcome Research Working Group, Organization of European Cancer Institutes (OECI)
  • Galina Velikova Medical Oncologist, University of Leeds and Leeds Teaching Hospitals (UK)
  • Stein Kaasa Professor of Palliative Medicine and Head of Department of Oncology, Oslo University Hospital
  • Magdalena Stepien Project Leader, European Commission Knowledge Centre on Cancer and EU Cancer Inequalities Registry
  • Anne Brédart Psychologist, Institut Curie, and Member, European Organisation For Research And Treatment Of Cancer (EORTC) Quality of Life Group
  • Augusto Caraceni Professor of Palliative Medicine, Università degli Studi di Milano
show all speakers (11)

Speakers

  • Cinzia Brunelli Chairperson, Cancer Outcome Research Working Group, Organization of European Cancer Institutes (OECI)
  • Galina Velikova Medical Oncologist, University of Leeds and Leeds Teaching Hospitals (UK)
  • Stein Kaasa Professor of Palliative Medicine and Head of Department of Oncology, Oslo University Hospital
  • Magdalena Stepien Project Leader, European Commission Knowledge Centre on Cancer and EU Cancer Inequalities Registry
  • Anne Brédart Psychologist, Institut Curie, and Member, European Organisation For Research And Treatment Of Cancer (EORTC) Quality of Life Group
  • Augusto Caraceni Professor of Palliative Medicine, Università degli Studi di Milano
show all speakers (11)