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Highlights from the EORTC conference on 20th/22nd April 2017 from our PCO Consultant

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Date: 3/5/2017

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Contributor: Angela Rylands

Patient Centred Outcome Consultant, Angela Rylands recently attended the 2-day The 4th Quality of Life in Cancer EORTC meeting in Brussels (over 360 delegates from 44 countries across the globe).  Angela reported it to be an excellent meeting consisting of oncology patients, clinicians, measurement experts (scientists, health care professionals and statisticians) from academia and industry, regulatory representatives (including FDA, EMA, IQWIG), and politicians.  

Angela's take home message was: collecting Quality of Life (QoL), or patient centred outcome (PCO) data for Oncology is complex, however there are several international ongoing initiatives that are attempting to resolve or work with these complexities to ensure robust data collection and appropriate data reporting to be successfully communicated back to patients, clinicians, providers, and industry to meet patient needs.

Angela's highlights include:

  1. An MEP speaker confirmed that quality of life (or patient centred outcome, PCO) data is on the political agenda in Europe.
  2. There were updates from different consortia that have been set up with the aim of standardising the reporting of QoL / PCO data (e.g. CONSORT-PRO and SISAQOL)
    1. CONSORT-PRO - aims to develop standards for reporting PCO data reported by the patient
    2. SISAQOL - an international effort to set standards; a recently formed consortium aiming to develop consensus around the best practice in terms of analytical methods
  3. There were updates from regulatory bodies (e.g. FDA and EMA) relating to their views on PCO data:
    1. EMA referred to the CHMP publication of 'Appendix 2' guidelines that outlines best practice for collecting QoL data in clinical trials - emphasising that EMA regard this data as important and must see a rationale for using selected questionnaires.
    2. FDA - echoed the importance of QoL data and talked about initiatives to ensure patient-focused drug development.
  4. The industry perspective of measuring QoL in oncology was also given and we were reminded of the many challenges for industry, needing to meet all stakeholder needs in an especially challenging environment of rapidly changing science; needing to adapt quickly to more and more breakthrough medications coming to phase 3 without the opportunity to fully validate new instruments. 
  5. Some suggestions to challenges in Qol/PCO in Oncology were offered, such as the existing item banks of validated oncology questions (e.g. EORTC item bank). However, if used in trials, these items need validating in the patient / trial populations.  
  6. There was quite a bit of discussion around the innovative way of collecting adverse events, by using the PRO-CTCAE. Essential for use in this space to capture disease related treatment complications.
  7. Survival oncology was discussed in some depth, owing to the fact that whilst there are more survivors, there is a need to focus on different concepts for patients that survive treatment and in longitudinal studies.
  8. A talk from representatives from the European Commission Initiative on Breast Cancer (ECIBC) outlined that it will be mandatory to collect QoL data in oncology. ECIBC have published recommendations and more work will be ongoing, as they prepare to launch a pilot scheme to kick off in 2018 (see
  9. The patient speakers who are active leaders and or collaborators in the EORTC consortium provided extremely helpful and poignant insights. One referred to the most important thing to patients being VALUE, defined as variations in my actual life and usual experience.
  10. Electronic collection of data was discussed in detail.  There was a consensus that the route to success should be on smart iphones. The need to build instruments measuring QoL / PCO to capture data in routine life was discussed and it was clear that patients, researchers, and clinicians are want to move towards electronic data capture.
  11. There was a very informative technical session describing the statistical and or measurement complexities of QoL /PCO data collection in oncology focusing on the importance of regular measurement, careful hypothesis testing, missing data etc. and the overall need for international standards.  

Thank you very much to EORTC organisers for the invitation to attend this fantastic conference.

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