COSMIN database

A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy

Authors:
Carlon, S., Shields, N., Yong, K., Gilmore, R., Sakzewski, L., and Boyd, R.
Abstract:
BACKGROUND: This systematic review aimed to evaluate the psychometric properties and clinical utility of all condition specific outcome measures used to assess quality of life (QOL) in school aged children with cerebral palsy (CP).

METHODS: Relevant outcome measures were identified by searching 8 electronic databases, supplemented by citation tracking. Two independent reviewers completed data extraction and analysis of the measures using a modified version of the CanChild Outcome Measures Rating Form.

RESULTS: From the 776 papers identified 5 outcome measures met the inclusion criteria: the Care and Comfort Hypertonicity Questionnaire (C&CHQ), the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), CP QOL-Child, DISABKIDS and PedsQL 3.0 CP Module. There was evidence of construct validity for all five measures. Content validity was reported for all measures except PedsQL 3.0. The CPCHILD and CP QOL-Child were the only outcome measures to have reported data on concurrent validity. All measures, with the exception of one (C&CHQ) provided evidence of internal reliability. The CPCHILD and the CP-QOL-Child had evidence of test-retest reliability and DISABKIDS had evidence of inter-rater reliability. There were no published data on the responsiveness of these outcome measures.

CONCLUSIONS: The CPCHILD and the CP QOL-Child demonstrated the strongest psychometric properties and clinical utility. Further work is needed, for all measures, on data for sensitivity to change.
DOI:
10.1186/1471-2431-10-81
URL:
https://www.ncbi.nlm.nih.gov/pubmed/21059270
Journal:
BMC Pediatr
issn:
1471-2431 (Electronic)
Publication year:
2010
pages:
81
Symptom status:
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Children (0-18)
Disease:
Diseases of and symptoms related to the nervous system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
C&CHQ - Care and Comfort Hypertonicity Questionnaire
CPCHILD - Caregiver Priorities and Child Health Index of Life with Disabilities
CP QOL-Child - Cerebral Palsy Quality of Life, child version
DISABKIDS
PedsQL-CP - Pediatric Quality of Life Inventory-Cerebral Palsy module