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, 1-12, [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.
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- Current Faculties > Faculty of Environmental and Life Sciences > School of Health Sciences > Nursing, Midwifery and Health > Child Health
School of Health Sciences > Nursing, Midwifery and Health > Child Health - Current Faculties > Faculty of Medicine > Clinical and Experimental Sciences > Clinical Neurosciences
Clinical and Experimental Sciences > Clinical Neurosciences - Current Faculties > Faculty of Environmental and Life Sciences > School of Psychology > Centre for Clinical and Community Applications of Health Psychology
School of Psychology > Centre for Clinical and Community Applications of Health Psychology - Faculties (pre 2018 reorg) > Faculty of Natural and Environmental Sciences (pre 2018 reorg) > Institute for Life Sciences (pre 2018 reorg)
Current Faculties > Faculty of Environmental and Life Sciences > Institute for Life Sciences > Institute for Life Sciences (pre 2018 reorg)
Institute for Life Sciences > Institute for Life Sciences (pre 2018 reorg) - Current Faculties > Faculty of Medicine > Primary Care, Population Sciences and Medical Education
Primary Care, Population Sciences and Medical Education - Current Faculties > Faculty of Medicine > Clinical and Experimental Sciences
Clinical and Experimental Sciences - Current Faculties > Faculty of Medicine > Wessex Institute > SHTAC
Wessex Institute > SHTAC
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