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.
1-12
Bull, Kim
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Hornsey, Samantha J.
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Kennedy, Colin
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Darlington, Anne-Sophie
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Grootenhuis, Martha A.
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Hargrave, Darren R.
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Liossi, Christina
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Shepherd, Jonathan
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Walker, David
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Morris, Christopher
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Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Hornsey, Samantha J.
93074bdf-f3f1-42c2-baec-669a4c1d587a
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.
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Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
Shepherd, Jonathan
dfbca97a-9307-4eee-bdf7-e27bcb02bc67
Walker, David
305b146b-bd74-4aec-9dfc-030439b07105
Morris, Christopher
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Bull, Kim, Hornsey, Samantha J., Kennedy, Colin, Darlington, Anne-Sophie, Grootenhuis, Martha A., Hargrave, Darren R., Liossi, Christina, Shepherd, Jonathan, Walker, David and Morris, Christopher
(2019)
Systematic review: Measurement properties of patient reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury.
Neuro-Oncology Practice, , [npz064].
(doi:10.1093/nop/npz064).
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
More information
Submitted date: 1 July 2019
Accepted/In Press date: 7 November 2019
e-pub ahead of print date: 8 December 2019
Identifiers
Local EPrints ID: 435545
URI: http://eprints.soton.ac.uk/id/eprint/435545
ISSN: 2054-2577
PURE UUID: a98da58d-c0ae-4d2c-b65c-ed51e60c3188
Catalogue record
Date deposited: 08 Nov 2019 17:30
Last modified: 26 Nov 2021 06:52
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Contributors
Author:
Martha A. Grootenhuis
Author:
Darren R. Hargrave
Author:
David Walker
Author:
Christopher Morris
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