Current state of quality of life and patient-reported outcomes research

Research output: Contribution to journalArticle

Authors

  • 5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty
  • Melanie Calvert

Colleges, School and Institutes

External organisations

  • Quality of Life Department, European Organisation for Research and Treatment of Cancer, Brussels, Belgium. Electronic address: andrew.bottomley@eortc.be.
  • Department of Neurology and Brain Tumor Center, Amsterdam University Medical Center, Amsterdam, The Netherlands.
  • Center for Clinical Studies, University Hospital Regensburg, Regensburg, Germany.
  • University Clinic for Child and Adolescent Psychiatry, Otto-von-Guericke-University, Magdeburg, Germany.
  • Faculty of Medicine and Health Sciences, Andrzej Frycz Modrzewski Krakow University, Krakow, Poland; Scanmed St. Raphael Hospital, Cracow, Poland.
  • Department of Gynecology, Medical University Hospital, Graz, Austria.

Abstract

The 5th EORTC Quality of Life in Cancer Clinical Trials Conference presented the current state of quality of life and other patient-reported outcomes (PROs) research from the perspectives of researchers, regulators, industry representatives, patients and patient advocates and health care professionals. A major theme was the assessment of the burden of cancer treatments, and this was discussed in terms of regulatory challenges in using PRO assessments in clinical trials, patients' experiences in cancer clinical trials, innovative methods and standardisation in cancer research, innovative methods across the disease sites or populations and cancer survivorship. Conferees demonstrated that PROs are becoming more accepted and major efforts are ongoing internationally to standardise PROs measurement, analysis and reporting in trials. Regulators are keen to collaborate with all stakeholders to ensure that the right questions are asked and the right answers are communicated. Improved technology and increased flexibility of measurement instruments are making PROs data more robust. Patients are being encouraged to be patient partners. International collaborations are essential, because this work cannot be accomplished on a national level.

Bibliographic note

Copyright © 2019 The Author(s). Published by Elsevier Ltd.. All rights reserved.

Details

Original languageEnglish
Pages (from-to)55-63
Number of pages9
JournalEuropean Journal of Cancer
Volume121
Early online date24 Sep 2019
Publication statusPublished - 1 Nov 2019

Keywords

  • Quality of life, Patient-reported outcomes, Symptom assessments, Cancer treatment, Cancer patients, Cancer survivorship