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Systematic review: Measurement properties of patient reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury

Systematic review: Measurement properties of patient reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury
Systematic review: Measurement properties of patient reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury
Background
Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome measures (PROMs) of HRQoL for these children, to be able to make informed decisions around selection of the most suitable PROM for use in clinical practice.

Methods
We searched MEDLINE, EMBASE, and PsycINFO for studies evaluating measurement properties of HRQoL PROMs in children treated for brain tumors or other ABI. Methodological quality of relevant studies was evaluated using the COSMIN checklist.

Results
Eight papers reported measurement properties of four questionnaires: Health Utilities Index (HUI), PedsQL Core and Brain Tumor Modules, and Child and Family Follow-up Survey (CFFS). Only the CFFS had evidence of content and structural validity. It also demonstrated good internal consistency whereas both PedsQL modules had conflicting evidence regarding this. Conflicting evidence regarding test-retest reliability was reported for HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All four PROMs had some evidence of construct validity/hypothesis testing but no evidence of responsiveness to change.

Conclusions
Valid and reliable assessment is essential to evaluate impact of ABI on young lives. However, measurement properties of PROMs evaluating HRQoL appropriate for this population require further evaluation, specifically construct validity, internal consistency, and responsiveness to change.
Acquired brain injury, Brain tumour, children
2054-2577
277-287
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Hornsey, Samantha
ae4537b0-04fd-4c1a-a859-e7863fab5055
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Grootenhuis, Martha A.
a2fbe577-d81b-41d1-86f5-d7c0beab16dd
Hargrave, Darren R.
ffb8f016-db32-44c7-9c66-f05b84431164
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
Shepherd, Jonathan
dfbca97a-9307-4eee-bdf7-e27bcb02bc67
Walker, David
305b146b-bd74-4aec-9dfc-030439b07105
Morris, Christopher
a5dc6cdc-49e0-4fbb-92e0-7f57811c5dc4
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Hornsey, Samantha
ae4537b0-04fd-4c1a-a859-e7863fab5055
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Grootenhuis, Martha A.
a2fbe577-d81b-41d1-86f5-d7c0beab16dd
Hargrave, Darren R.
ffb8f016-db32-44c7-9c66-f05b84431164
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
Shepherd, Jonathan
dfbca97a-9307-4eee-bdf7-e27bcb02bc67
Walker, David
305b146b-bd74-4aec-9dfc-030439b07105
Morris, Christopher
a5dc6cdc-49e0-4fbb-92e0-7f57811c5dc4

Bull, Kim, Hornsey, Samantha, Kennedy, Colin, Darlington, Anne-Sophie, Grootenhuis, Martha A., Hargrave, Darren R., Liossi, Christina, Shepherd, Jonathan, Walker, David and Morris, Christopher (2020) Systematic review: Measurement properties of patient reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury. Neuro-Oncology Practice, 7 (3), 277-287, [npz064]. (doi:10.1093/nop/npz064).

Record type: Review

Abstract

Background
Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome measures (PROMs) of HRQoL for these children, to be able to make informed decisions around selection of the most suitable PROM for use in clinical practice.

Methods
We searched MEDLINE, EMBASE, and PsycINFO for studies evaluating measurement properties of HRQoL PROMs in children treated for brain tumors or other ABI. Methodological quality of relevant studies was evaluated using the COSMIN checklist.

Results
Eight papers reported measurement properties of four questionnaires: Health Utilities Index (HUI), PedsQL Core and Brain Tumor Modules, and Child and Family Follow-up Survey (CFFS). Only the CFFS had evidence of content and structural validity. It also demonstrated good internal consistency whereas both PedsQL modules had conflicting evidence regarding this. Conflicting evidence regarding test-retest reliability was reported for HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All four PROMs had some evidence of construct validity/hypothesis testing but no evidence of responsiveness to change.

Conclusions
Valid and reliable assessment is essential to evaluate impact of ABI on young lives. However, measurement properties of PROMs evaluating HRQoL appropriate for this population require further evaluation, specifically construct validity, internal consistency, and responsiveness to change.

Text
NOP-D-19-00078R1 revised text - Accepted Manuscript
Available under License University of Southampton Accepted Manuscript Licence.
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More information

Submitted date: 1 July 2019
Accepted/In Press date: 7 November 2019
e-pub ahead of print date: 8 December 2019
Published date: June 2020
Additional Information: © The Author(s) 2019. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology
Keywords: Acquired brain injury, Brain tumour, children
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Identifiers

Local EPrints ID: 435545
URI: http://eprints.soton.ac.uk/id/eprint/435545
DOI: doi:10.1093/nop/npz064
ISSN: 2054-2577
PURE UUID: a98da58d-c0ae-4d2c-b65c-ed51e60c3188
ORCID for Kim Bull: ORCID iD orcid.org/0000-0002-5541-4556
ORCID for Samantha Hornsey: ORCID iD orcid.org/0000-0003-1521-248X
ORCID for Christina Liossi: ORCID iD orcid.org/0000-0003-0627-6377
ORCID for Jonathan Shepherd: ORCID iD orcid.org/0000-0003-1682-4330

Catalogue record

Date deposited: 08 Nov 2019 17:30
Last modified: 10 May 2023 04:01

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Contributors

Author: Kim Bull ORCID iD
Author: Samantha Hornsey ORCID iD
Author: Colin Kennedy
Author: Anne-Sophie Darlington
Author: Martha A. Grootenhuis
Author: Darren R. Hargrave
Author: Christina Liossi ORCID iD
Author: Jonathan Shepherd ORCID iD
Author: David Walker
Author: Christopher Morris

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