Systematic review on the use of patient-reported outcome measures in brain tumor studies: Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative

Linda Dirven; Maartje E. Vos; Tobias Walbert; Terri S. Armstrong; David Arons; Martin J. Van Den Bent; Jaishri Blakeley; Paul D. Brown; Helen Bulbeck; Susan M. Chang; Corneel Coens; Mark R. Gilbert; Robin Grant; Rakesh Jalali; Danielle Leach; Heather Leeper; Tito Mendoza; Lakshmi Nayak; Kathy Oliver; Jaap C. Reijneveld; Emilie Le Rhun; Larry Rubinstein; Michael Weller; Patrick Y. Wen; Martin J.B. Taphoorn

doi:10.1093/nop/npab013

Systematic review on the use of patient-reported outcome measures in brain tumor studies: Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative

Linda Dirven, Maartje E. Vos, Tobias Walbert, Terri S. Armstrong, David Arons, Martin J. Van Den Bent, Jaishri Blakeley, Paul D. Brown, Helen Bulbeck, Susan M. Chang, Corneel Coens, Mark R. Gilbert, Robin Grant, Rakesh Jalali, Danielle Leach, Heather Leeper, Tito Mendoza, Lakshmi Nayak, Kathy Oliver, Jaap C. ReijneveldEmilie Le Rhun, Larry Rubinstein, Michael Weller, Patrick Y. Wen, Martin J.B. Taphoorn

Symptom Research CAO

Research output: Contribution to journal › Article › peer-review

11 Scopus citations

Abstract

Background: The Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) working group aims to provide guidance on the use of PROs in brain tumor patients. PRO measures should be of high quality, both in terms of relevance and other measurement properties. This systematic review aimed to identify PRO measures that have been used in brain tumor studies to date. Methods: A systematic literature search for articles published up to June 25, 2020 was conducted in several electronic databases. Pre-specified inclusion criteria were used to identify studies using PRO measures assessing symptoms, (instrumental) activities of daily living [(I)ADL] or health-related quality of life (HRQoL) in adult patients with glioma, meningioma, primary central nervous system lymphoma, or brain metastasis. Results: A total of 215 different PRO measures were identified in 571 published and 194 unpublished studies. The identified PRO measures include brain tumor-specific, cancer-specific, and generic instruments, as well as instruments designed for other indications or multi- or single-item study-specific questionnaires. The most frequently used instruments were the EORTC QLQ-C30 and QLQ-BN20 (n = 286 and n = 247), and the FACT-Br (n = 167), however, the majority of the instruments were used only once or twice (150/215). Conclusion: Many different PRO measures assessing symptoms, (I)ADL or HRQoL have been used in brain tumor studies to date. Future research should clarify whether these instruments or their scales/items exhibit good content validity and other measurement properties for use in brain tumor patients.

Original language	English (US)
Pages (from-to)	417-425
Number of pages	9
Journal	Neuro-Oncology Practice
Volume	8
Issue number	4
DOIs	https://doi.org/10.1093/nop/npab013
State	Published - Aug 1 2021

Keywords

activities of daily living
brain tumor
health-related quality of life
patient-reported outcome
symptoms

ASJC Scopus subject areas

Medicine (miscellaneous)
Oncology
Neurology

Access to Document

10.1093/nop/npab013

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Dirven, L., Vos, M. E., Walbert, T., Armstrong, T. S., Arons, D., Van Den Bent, M. J., Blakeley, J., Brown, P. D., Bulbeck, H., Chang, S. M., Coens, C., Gilbert, M. R., Grant, R., Jalali, R., Leach, D., Leeper, H., Mendoza, T., Nayak, L., Oliver, K., ... Taphoorn, M. J. B. (2021). Systematic review on the use of patient-reported outcome measures in brain tumor studies: Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative. Neuro-Oncology Practice, 8(4), 417-425. https://doi.org/10.1093/nop/npab013

Systematic review on the use of patient-reported outcome measures in brain tumor studies: Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative. / Dirven, Linda; Vos, Maartje E.; Walbert, Tobias et al.
In: Neuro-Oncology Practice, Vol. 8, No. 4, 01.08.2021, p. 417-425.

Research output: Contribution to journal › Article › peer-review

Dirven, L, Vos, ME, Walbert, T, Armstrong, TS, Arons, D, Van Den Bent, MJ, Blakeley, J, Brown, PD, Bulbeck, H, Chang, SM, Coens, C, Gilbert, MR, Grant, R, Jalali, R, Leach, D, Leeper, H, Mendoza, T, Nayak, L, Oliver, K, Reijneveld, JC, Le Rhun, E, Rubinstein, L, Weller, M, Wen, PY & Taphoorn, MJB 2021, 'Systematic review on the use of patient-reported outcome measures in brain tumor studies: Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative', Neuro-Oncology Practice, vol. 8, no. 4, pp. 417-425. https://doi.org/10.1093/nop/npab013

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title = "Systematic review on the use of patient-reported outcome measures in brain tumor studies: Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative",

abstract = "Background: The Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) working group aims to provide guidance on the use of PROs in brain tumor patients. PRO measures should be of high quality, both in terms of relevance and other measurement properties. This systematic review aimed to identify PRO measures that have been used in brain tumor studies to date. Methods: A systematic literature search for articles published up to June 25, 2020 was conducted in several electronic databases. Pre-specified inclusion criteria were used to identify studies using PRO measures assessing symptoms, (instrumental) activities of daily living [(I)ADL] or health-related quality of life (HRQoL) in adult patients with glioma, meningioma, primary central nervous system lymphoma, or brain metastasis. Results: A total of 215 different PRO measures were identified in 571 published and 194 unpublished studies. The identified PRO measures include brain tumor-specific, cancer-specific, and generic instruments, as well as instruments designed for other indications or multi- or single-item study-specific questionnaires. The most frequently used instruments were the EORTC QLQ-C30 and QLQ-BN20 (n = 286 and n = 247), and the FACT-Br (n = 167), however, the majority of the instruments were used only once or twice (150/215). Conclusion: Many different PRO measures assessing symptoms, (I)ADL or HRQoL have been used in brain tumor studies to date. Future research should clarify whether these instruments or their scales/items exhibit good content validity and other measurement properties for use in brain tumor patients.",

keywords = "activities of daily living, brain tumor, health-related quality of life, patient-reported outcome, symptoms",

author = "Linda Dirven and Vos, {Maartje E.} and Tobias Walbert and Armstrong, {Terri S.} and David Arons and {Van Den Bent}, {Martin J.} and Jaishri Blakeley and Brown, {Paul D.} and Helen Bulbeck and Chang, {Susan M.} and Corneel Coens and Gilbert, {Mark R.} and Robin Grant and Rakesh Jalali and Danielle Leach and Heather Leeper and Tito Mendoza and Lakshmi Nayak and Kathy Oliver and Reijneveld, {Jaap C.} and {Le Rhun}, Emilie and Larry Rubinstein and Michael Weller and Wen, {Patrick Y.} and Taphoorn, {Martin J.B.}",

note = "Publisher Copyright: {\textcopyright} 2021 The Author(s) 2021. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.",

year = "2021",

month = aug,

day = "1",

doi = "10.1093/nop/npab013",

language = "English (US)",

volume = "8",

pages = "417--425",

journal = "Neuro-Oncology Practice",

issn = "2054-2577",

publisher = "Oxford University Press",

number = "4",

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TY - JOUR

T1 - Systematic review on the use of patient-reported outcome measures in brain tumor studies

T2 - Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative

AU - Dirven, Linda

AU - Vos, Maartje E.

AU - Walbert, Tobias

AU - Armstrong, Terri S.

AU - Arons, David

AU - Van Den Bent, Martin J.

AU - Blakeley, Jaishri

AU - Brown, Paul D.

AU - Bulbeck, Helen

AU - Chang, Susan M.

AU - Coens, Corneel

AU - Gilbert, Mark R.

AU - Grant, Robin

AU - Jalali, Rakesh

AU - Leach, Danielle

AU - Leeper, Heather

AU - Mendoza, Tito

AU - Nayak, Lakshmi

AU - Oliver, Kathy

AU - Reijneveld, Jaap C.

AU - Le Rhun, Emilie

AU - Rubinstein, Larry

AU - Weller, Michael

AU - Wen, Patrick Y.

AU - Taphoorn, Martin J.B.

N1 - Publisher Copyright: © 2021 The Author(s) 2021. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

PY - 2021/8/1

Y1 - 2021/8/1

N2 - Background: The Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) working group aims to provide guidance on the use of PROs in brain tumor patients. PRO measures should be of high quality, both in terms of relevance and other measurement properties. This systematic review aimed to identify PRO measures that have been used in brain tumor studies to date. Methods: A systematic literature search for articles published up to June 25, 2020 was conducted in several electronic databases. Pre-specified inclusion criteria were used to identify studies using PRO measures assessing symptoms, (instrumental) activities of daily living [(I)ADL] or health-related quality of life (HRQoL) in adult patients with glioma, meningioma, primary central nervous system lymphoma, or brain metastasis. Results: A total of 215 different PRO measures were identified in 571 published and 194 unpublished studies. The identified PRO measures include brain tumor-specific, cancer-specific, and generic instruments, as well as instruments designed for other indications or multi- or single-item study-specific questionnaires. The most frequently used instruments were the EORTC QLQ-C30 and QLQ-BN20 (n = 286 and n = 247), and the FACT-Br (n = 167), however, the majority of the instruments were used only once or twice (150/215). Conclusion: Many different PRO measures assessing symptoms, (I)ADL or HRQoL have been used in brain tumor studies to date. Future research should clarify whether these instruments or their scales/items exhibit good content validity and other measurement properties for use in brain tumor patients.

AB - Background: The Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) working group aims to provide guidance on the use of PROs in brain tumor patients. PRO measures should be of high quality, both in terms of relevance and other measurement properties. This systematic review aimed to identify PRO measures that have been used in brain tumor studies to date. Methods: A systematic literature search for articles published up to June 25, 2020 was conducted in several electronic databases. Pre-specified inclusion criteria were used to identify studies using PRO measures assessing symptoms, (instrumental) activities of daily living [(I)ADL] or health-related quality of life (HRQoL) in adult patients with glioma, meningioma, primary central nervous system lymphoma, or brain metastasis. Results: A total of 215 different PRO measures were identified in 571 published and 194 unpublished studies. The identified PRO measures include brain tumor-specific, cancer-specific, and generic instruments, as well as instruments designed for other indications or multi- or single-item study-specific questionnaires. The most frequently used instruments were the EORTC QLQ-C30 and QLQ-BN20 (n = 286 and n = 247), and the FACT-Br (n = 167), however, the majority of the instruments were used only once or twice (150/215). Conclusion: Many different PRO measures assessing symptoms, (I)ADL or HRQoL have been used in brain tumor studies to date. Future research should clarify whether these instruments or their scales/items exhibit good content validity and other measurement properties for use in brain tumor patients.

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KW - health-related quality of life

KW - patient-reported outcome

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Systematic review on the use of patient-reported outcome measures in brain tumor studies: Part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative

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