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; Maxime Sasseville; Daniel O'Connor; Paul G. Kluetz; Alicyn Campbell; Giovanni Tafuri; Mogens Grønvold; Claire Snyder; Carolyn Gotay; Dame Lesley Fallowfield; Kathi Apostolidis; Roger Wilson; Richard Stephens; Kathy Oliver; Holger Schunemann; Melanie Calvert; Bernhard Holzner; Jammbe Z. Musoro; Sally Wheelwright; Francesca Martinelli; Amylou C. Dueck; Madeline Pe; Corneel Coens; Galina Velikova; Dagmara Kulis; Martin J. B. Taphoorn; Anne-Sophie Darlington; Ian Lewis; Lonneke van de Poll-Franse

doi:10.1016/j.ejca.2019.08.016

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, Maxime Sasseville, Daniel O'Connor, Paul G. Kluetz, Alicyn Campbell, Giovanni Tafuri, Mogens Grønvold, Claire Snyder, Carolyn Gotay, Dame Lesley Fallowfield, Kathi Apostolidis, Roger Wilson, Richard StephensKathy Oliver, Holger Schunemann, Melanie Calvert, Bernhard Holzner, Jammbe Z. Musoro, Sally Wheelwright, Francesca Martinelli, Amylou C. Dueck, Madeline Pe, Corneel Coens, Galina Velikova, Dagmara Kulis, Martin J. B. Taphoorn, Anne-Sophie Darlington, Ian Lewis, Lonneke van de Poll-Franse

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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.

Originalsprog	Engelsk
Tidsskrift	European Journal of Cancer
Vol/bind	121
Sider (fra-til)	55-63
Antal sider	9
ISSN	0959-8049
DOI	https://doi.org/10.1016/j.ejca.2019.08.016
Status	Udgivet - nov. 2019

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10.1016/j.ejca.2019.08.016Licens: CC BY-NC-ND

Current state of quality of life and patient-reported outcomes researchForlagets udgivne version, 308 KBLicens: CC BY-NC-ND

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Bottomley, A., Reijneveld, J. C., Koller, M., Flechtner, H., Tomaszewski, K. A., Greimel, E., Ganz, P. A., Ringash, J., Sasseville, M., O'Connor, D., Kluetz, P. G., Campbell, A., Tafuri, G., Grønvold, M., Snyder, C., Gotay, C., Fallowfield, D. L., Apostolidis, K., Wilson, R., ... van de Poll-Franse, L. (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, A, Reijneveld, JC, Koller, M, Flechtner, H, Tomaszewski, KA, Greimel, E, Ganz, PA, Ringash, J, Sasseville, M, O'Connor, D, Kluetz, PG, Campbell, A, Tafuri, G, Grønvold, M, Snyder, C, Gotay, C, Fallowfield, DL, Apostolidis, K, Wilson, R, Stephens, R, Oliver, K, Schunemann, H, Calvert, M, Holzner, B, Musoro, JZ, Wheelwright, S, Martinelli, F, Dueck, AC, Pe, M, Coens, C, Velikova, G, Kulis, D, Taphoorn, MJB, Darlington, A-S, Lewis, I & van de Poll-Franse, L 2019, 'Current state of quality of life and patient-reported outcomes research', European Journal of Cancer, bind 121, s. 55-63. https://doi.org/10.1016/j.ejca.2019.08.016

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title = "Current state of quality of life and patient-reported outcomes research",

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{\textquoteright} 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.",

keywords = "Quality of life, Patient-reported outcomes, Symptom assessments, Cancer treatment, Cancer patients, Cancer survivorship",

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 Maxime Sasseville and Daniel O'Connor and Kluetz, {Paul G.} and Alicyn Campbell 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 Kathy Oliver and Holger Schunemann 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 Kulis and Taphoorn, {Martin J. B.} and Anne-Sophie Darlington and Ian Lewis and {van de Poll-Franse}, Lonneke",

year = "2019",

month = nov,

doi = "10.1016/j.ejca.2019.08.016",

language = "English",

volume = "121",

pages = "55--63",

journal = "European Journal of Cancer",

issn = "0959-8049",

publisher = "Pergamon",

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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 - Sasseville, Maxime

AU - O'Connor, Daniel

AU - Kluetz, Paul G.

AU - Campbell, Alicyn

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 - Oliver, Kathy

AU - Schunemann, 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 - Kulis, Dagmara

AU - Taphoorn, Martin J. B.

AU - Darlington, Anne-Sophie

AU - Lewis, Ian

AU - van de Poll-Franse, Lonneke

PY - 2019/11

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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.

AB - 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.

KW - Quality of life

KW - Patient-reported outcomes

KW - Symptom assessments

KW - Cancer treatment

KW - Cancer patients

KW - Cancer survivorship

U2 - 10.1016/j.ejca.2019.08.016

DO - 10.1016/j.ejca.2019.08.016

M3 - Journal article

C2 - 31561134

SN - 0959-8049

VL - 121

SP - 55

EP - 63

JO - European Journal of Cancer

JF - European Journal of Cancer

ER -

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

Abstract

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