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

Bottomley, Andrew and Reijneveld, Jaap C. and Koller, Michael and Flechtner, Henning and Tomaszewski, Krzysztof A. and Greimel, Eva and Ganz, Patricia A. and Ringash, Jolie and Sasseville, Maxime and O'Connor, Daniel and Kluetz, Paul G. and Campbell, Alicyn and Tafuri, Giovanni and Gronvold, Mogens and Snyder, Claire and Gotay, Carolyn and Fallowfield, Dame Lesley and Apostolidis, Kathi and Wilson, Roger and Stephens, Richard and Oliver, Kathy and Schunemann, Holger and Calvert, Melanie and Holzner, Bernhard and Musoro, Jammbe Z. and Wheelwright, Sally and Martinelli, Francesca and Dueck, Amylou C. and Pe, Madeline and Coens, Corneel and Velikova, Galina and Kulis, Dagmara and Taphoorn, Martin J. B. and Darlington, Anne-Sophie and Lewis, Ian and van de Poll-Franse, Lonneke (2019) Current state of quality of life and patient-reported outcomes research. EUROPEAN JOURNAL OF CANCER, 121. pp. 55-63. ISSN 0959-8049, 1879-0852

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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. (C) 2019 The Author(s). Published by Elsevier Ltd.

Item Type: Article
Uncontrolled Keywords: PROGRESSION-FREE SURVIVAL; CANCER CLINICAL-TRIALS; ADVERSE EVENTS; BREAST-CANCER; DOUBLE-BLIND; HEALTH; ADOLESCENTS; PLACEBO; ADULTS; RISK; Quality of life; Patient-reported outcomes; Symptom assessments; Cancer treatment; Cancer patients; Cancer survivorship
Subjects: 600 Technology > 610 Medical sciences Medicine
Divisions: Medicine > Zentren des Universitätsklinikums Regensburg > Zentrum für Klinische Studien
Depositing User: Dr. Gernot Deinzer
Date Deposited: 25 Mar 2020 14:42
Last Modified: 25 Mar 2020 14:42
URI: https://pred.uni-regensburg.de/id/eprint/25948

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