Quality of life in children and adolescents with cerebral palsy: a systematic review with meta-analysis

Abstract

Background

Cerebral palsy has been linked to decreased quality of life. However use of self- versus proxy-perspectives and norm-sample comparisons to examine quality of life impact may produce different results.

Aims

To compare quality of life ratings in children and adolescents with cerebral palsy relative to typically developing peers in consideration of sample and methodological moderators on estimated effects.

Methods

Eleven independent studies, comprising a pooled sample of 1475 families living with cerebral palsy and 42119 peers, were identified. Study reporting quality was evaluated with the QualSyst tool and standardised mean group differences (Hedges’ g) with associated confidence intervals and p values calculated. Heterogeneity was examined using a random effects model.

Results

All studies provided good to excellent methodological and statistical detail. Physical quality of life was significantly impaired among those with cerebral palsy (g range: −0.42 to −1.58). However, inconsistent findings were noted in relation to the effect of cerebral palsy on psychological (g range: 0.04 to −0.80) and social quality of life (g range: −0.80 to −0.51), depending on the measurement used. There was a trend for parents to evaluate their child’s physical quality of life lower than child-reported scores.

Conclusions

Physical quality of life is, invariably, more affected in those with cerebral palsy. The connection between cerebral palsy and psychosocial quality of life is less clear. Noted parent-child discrepancies highlight the value of a multi-informant approach to child quality of life assessment.

Implications for rehabilitation

• Quality of life is an important health-related outcome in cerebral palsy research and practice.

• Collecting both self-report and proxy data can help to highlight quality of life issues that are salient to the parent and to the child or adolescent with cerebral palsy.

• Selection of the appropriate quality of life instrument depends on the assessment purpose, with available measures varying in their focus on functionality, subjectivity and illness-specific items.

• Quality of life assessment of children with cerebral palsy should extend beyond functional abilities to include less obvious, but critical, psychological and social issues.

Keywords:

• Adolescents
• health
• disability
• wellbeing
• cross-sectional

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Acknowledgements

The authors would like to acknowledge Maureen Bell, Research Librarian at the University of Adelaide, for assistance with the electronic database searches. Special thanks must also go to the authors of included studies, in particular the Study of Participation of Children with CP Living in Europe group, who kindly responded to requests for additional data.

Disclosure statement

The authors declare that they have no conflict of interest.

*denotes studies included in meta-analysis.