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

Andrew Bottomley*, Jaap C. Reijneveld, Michael Koller, Henning Flechtner, Krzysztof A. Tomaszewski, Eva Greimel, Patricia A. Ganz, Jolie Ringash, Daniel O'connor, Paul G. Kluetz, Giovanni Tafuri, Mogens Grønvold, Claire Snyder, Carolyn Gotay, Dame Lesley Fallowfield, Kathi Apostolidis, Roger Wilson, Richard Stephens, Holger Schünemann, Melanie CalvertBernhard Holzner, Jammbe Z. Musoro, Sally Wheelwright, Francesca Martinelli, Amylou C. Dueck, Madeline Pe, Corneel Coens, Galina Velikova, Dagmara Kuliś, Martin J.b. Taphoorn, Anne-sophie Darlington, Ian Lewis, Lonneke van de Poll-Franse

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

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.

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Keywords

  • ADOLESCENTS
  • ADULTS
  • ADVERSE EVENTS
  • BREAST-CANCER
  • CANCER CLINICAL-TRIALS
  • Cancer patients
  • Cancer survivorship
  • Cancer treatment
  • DOUBLE-BLIND
  • HEALTH
  • PLACEBO
  • PROGRESSION-FREE SURVIVAL
  • Patient-reported outcomes
  • Quality of life
  • RISK
  • Symptom assessments

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