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

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

Previous article in issue
0959-8049
55-63
Bottomley, Andrew
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Reijneveld, Jaap C.
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Koller, Michael
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Flechtner, Henning
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Tomaszewski, Krzysztof A.
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Greimel, Eva
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Ganz, Patricia A.
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Ringash, Jolie
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O'connor, Daniel
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Kluetz, Paul G.
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Tafuri, Giovanni
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Snyder, Claire
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Gotay, Carolyn
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Fallowfield, Dame Lesley
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Apostolidis, Kathi
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Wilson, Roger
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Stephens, Richard
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Schünemann, Holger
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Calvert, Melanie
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Holzner, Bernhard
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Musoro, Jammbe Z.
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Wheelwright, Sally
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Martinelli, Francesca
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Dueck, Amylou C.
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Pe, Madeline
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Coens, Corneel
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Velikova, Galina
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Kuliś, Dagmara
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Taphoorn, Martin J.b.
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Darlington, Anne-sophie
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Lewis, Ian
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Van De Poll-franse, Lonneke
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Bottomley, Andrew
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Reijneveld, Jaap C.
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Koller, Michael
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Flechtner, Henning
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Tomaszewski, Krzysztof A.
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Greimel, Eva
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Ganz, Patricia A.
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Ringash, Jolie
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O'connor, Daniel
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Kluetz, Paul G.
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Tafuri, Giovanni
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Grønvold, Mogens
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Snyder, Claire
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Gotay, Carolyn
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Fallowfield, Dame Lesley
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Apostolidis, Kathi
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Wilson, Roger
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Stephens, Richard
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Schünemann, Holger
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Calvert, Melanie
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Holzner, Bernhard
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Musoro, Jammbe Z.
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Wheelwright, Sally
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Martinelli, Francesca
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Dueck, Amylou C.
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Pe, Madeline
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Coens, Corneel
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Velikova, Galina
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Kuliś, Dagmara
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Taphoorn, Martin J.b.
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Darlington, Anne-sophie
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Lewis, Ian
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Van De Poll-franse, Lonneke
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Bottomley, Andrew, Reijneveld, Jaap C., Koller, Michael, Flechtner, Henning, Tomaszewski, Krzysztof A., Greimel, Eva, Ganz, Patricia A., Ringash, Jolie, O'connor, Daniel, Kluetz, Paul G., Tafuri, Giovanni, Grønvold, Mogens, Snyder, Claire, Gotay, Carolyn, Fallowfield, Dame Lesley, Apostolidis, Kathi, Wilson, Roger, Stephens, Richard, Schünemann, Holger, Calvert, Melanie, Holzner, Bernhard, Musoro, Jammbe Z., Wheelwright, Sally, Martinelli, Francesca, Dueck, Amylou C., Pe, Madeline, Coens, Corneel, Velikova, Galina, Kuliś, Dagmara, Taphoorn, Martin J.b., Darlington, Anne-sophie, 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, 55-63. (doi:10.1016/j.ejca.2019.08.016).

Record type: Article

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.

Previous article in issue

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e-pub ahead of print date: 24 September 2019
Published date: 1 November 2019

Identifiers

Local EPrints ID: 435354
URI: http://eprints.soton.ac.uk/id/eprint/435354
ISSN: 0959-8049
PURE UUID: 109afa71-6f8a-486d-8b88-54d993d88fed
ORCID for Sally Wheelwright: ORCID iD orcid.org/0000-0003-0657-2483

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Date deposited: 31 Oct 2019 17:30
Last modified: 02 Nov 2019 01:33

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Contributors

Author: Andrew Bottomley
Author: Jaap C. Reijneveld
Author: Michael Koller
Author: Henning Flechtner
Author: Krzysztof A. Tomaszewski
Author: Eva Greimel
Author: Patricia A. Ganz
Author: Jolie Ringash
Author: Daniel O'connor
Author: Paul G. Kluetz
Author: Giovanni Tafuri
Author: Mogens Grønvold
Author: Claire Snyder
Author: Carolyn Gotay
Author: Dame Lesley Fallowfield
Author: Kathi Apostolidis
Author: Roger Wilson
Author: Richard Stephens
Author: Holger Schünemann
Author: Melanie Calvert
Author: Bernhard Holzner
Author: Jammbe Z. Musoro
Author: Francesca Martinelli
Author: Amylou C. Dueck
Author: Madeline Pe
Author: Corneel Coens
Author: Galina Velikova
Author: Dagmara Kuliś
Author: Martin J.b. Taphoorn
Author: Ian Lewis
Author: Lonneke Van De Poll-franse

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