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

Bull, Kim S.; Hornsey, Samantha; Kennedy, Colin R.; Darlington, Anne-Sophie E.; Grootenhuis, Martha A.; Hargrave, Darren; Liossi, Christina; Shepherd, Jonathan P.; Walker, David A.; Morris, Christopher

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 about 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 consensus-based standards for the selection of health status measurement instruments checklist.

Results

Eight papers reported measurement properties of 4 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 the HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All 4 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

Citation

Bull, K. S., Hornsey, S., Kennedy, C. R., Darlington, A. E., Grootenhuis, M. A., Hargrave, D., …Morris, C. (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. https://doi.org/10.1093/nop/npz064

• Journal Article Type: Article
• Acceptance Date: Dec 1, 2019
• Online Publication Date: Dec 8, 2019
• Publication Date: 2020-06
• Deposit Date: May 12, 2020
• Journal: Neuro-Oncology Practice
• Print ISSN: 2054-2577
• Electronic ISSN: 2054-2585
• Publisher: Oxford University Press
• Peer Reviewed: Peer Reviewed
• Volume: 7
• Issue: 3
• Pages: 277–287
• DOI: https://doi.org/10.1093/nop/npz064
• Keywords: Medicine (miscellaneous)
• Public URL: https://nottingham-repository.worktribe.com/output/4422370
• Publisher URL: https://academic.oup.com/nop/article-abstract/7/3/277/5669918?redirectedFrom=fulltext