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 Calvert & 14 others Bernhard 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, 5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty

Research output: Contribution to journalArticleAcademicpeer-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.
Original languageEnglish
Pages (from-to)55-63
JournalEuropean Journal of Cancer
Volume121
DOIs
Publication statusPublished - 1 Nov 2019
Externally publishedYes

Cite this

Bottomley, A., Reijneveld, J. C., Koller, M., Flechtner, H., Tomaszewski, K. A., Greimel, E., ... 5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty (2019). Current state of quality of life and patient-reported outcomes research. European Journal of Cancer, 121, 55-63. https://doi.org/10.1016/j.ejca.2019.08.016
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 ; van de Poll-Franse, Lonneke ; 5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty. / Current state of quality of life and patient-reported outcomes research. In: European Journal of Cancer. 2019 ; Vol. 121. pp. 55-63.
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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.",
author = "Andrew Bottomley and Reijneveld, {Jaap C.} and Michael Koller and Henning Flechtner and Tomaszewski, {Krzysztof A.} and Eva Greimel and Ganz, {Patricia A.} and Jolie Ringash and Daniel O'Connor and Kluetz, {Paul G.} and Giovanni Tafuri and Mogens Gr{\o}nvold and Claire Snyder and Carolyn Gotay and Fallowfield, {Dame Lesley} and Kathi Apostolidis and Roger Wilson and Richard Stephens and Holger Sch{\"u}nemann and Melanie Calvert and Bernhard Holzner and Musoro, {Jammbe Z.} and Sally Wheelwright and Francesca Martinelli and Dueck, {Amylou C.} and Madeline Pe and Corneel Coens and Galina Velikova and Dagmara Kuliś and Taphoorn, {Martin J. B.} and Anne-Sophie Darlington and Ian Lewis and {van de Poll-Franse}, Lonneke and {5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty}",
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Bottomley, A, Reijneveld, JC, Koller, M, Flechtner, H, Tomaszewski, KA, Greimel, E, Ganz, PA, Ringash, J, O'Connor, D, Kluetz, PG, Tafuri, G, Grønvold, M, Snyder, C, Gotay, C, Fallowfield, DL, Apostolidis, K, Wilson, R, Stephens, R, Schünemann, H, Calvert, M, Holzner, B, Musoro, JZ, Wheelwright, S, Martinelli, F, Dueck, AC, Pe, M, Coens, C, Velikova, G, Kuliś, D, Taphoorn, MJB, Darlington, A-S, Lewis, I, van de Poll-Franse, L & 5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty 2019, 'Current state of quality of life and patient-reported outcomes research' European Journal of Cancer, vol. 121, pp. 55-63. https://doi.org/10.1016/j.ejca.2019.08.016

Current state of quality of life and patient-reported outcomes research. / 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; van de Poll-Franse, Lonneke; 5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty.

In: European Journal of Cancer, Vol. 121, 01.11.2019, p. 55-63.

Research output: Contribution to journalArticleAcademicpeer-review

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T1 - Current state of quality of life and patient-reported outcomes research

AU - Bottomley, Andrew

AU - Reijneveld, Jaap C.

AU - Koller, Michael

AU - Flechtner, Henning

AU - Tomaszewski, Krzysztof A.

AU - Greimel, Eva

AU - Ganz, Patricia A.

AU - Ringash, Jolie

AU - O'Connor, Daniel

AU - Kluetz, Paul G.

AU - Tafuri, Giovanni

AU - Grønvold, Mogens

AU - Snyder, Claire

AU - Gotay, Carolyn

AU - Fallowfield, Dame Lesley

AU - Apostolidis, Kathi

AU - Wilson, Roger

AU - Stephens, Richard

AU - Schünemann, Holger

AU - Calvert, Melanie

AU - Holzner, Bernhard

AU - Musoro, Jammbe Z.

AU - Wheelwright, Sally

AU - Martinelli, Francesca

AU - Dueck, Amylou C.

AU - Pe, Madeline

AU - Coens, Corneel

AU - Velikova, Galina

AU - Kuliś, Dagmara

AU - Taphoorn, Martin J. B.

AU - Darlington, Anne-Sophie

AU - Lewis, Ian

AU - van de Poll-Franse, Lonneke

AU - 5th EORTC Quality of Life in Cancer Clinical Trials Conference Faculty

PY - 2019/11/1

Y1 - 2019/11/1

N2 - 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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