Neuropediatrics 2006; 37 - PS2_2_3
DOI: 10.1055/s-2006-945567

RELIABILITY AND VALIDITY OF THE CEREBRAL PALSY QUALITY OF LIFE QUESTIONNAIRE FOR CHILDREN (CP QOL- Child)

E Waters 1, E Davis 1, D Reddihough 1, H Kerr Graham 1, A Mackinnon 1, R Boyd 1
  • 1Deakin University, Burwood, Victoria, Australia

Objectives: Increasingly clinical trials of the efficacy of treatments need to measure QOL in addition to body structure and function. The Children with Cerebral Palsy Quality of Life Scale (CP QOL- Child) has been developed by an international team of clinicians and researchers and parents and children and is the first conditionspecific QOL scale for children with CP. The CP QOL- Child is based on thematic data from parents and children and a review of the conceptual underpinning of paediatric QOL instruments. This study aimed to test the CP QOL-Child and describe its psychometric properties.

Methods: A representative sample of parents of children with CP aged 4–12 years (n=200) were recruited from the Victorian CP register, based on GMFCS levels, socioeconomic status and urban/rural residence. A questionnaire package was mailed to each family, including the CP QOL- Child, KIDSCREEN (QOL), Child Health Questionnaire (health status and wellbeing) and GMFCS (functioning). Reliability (internal consistency, test re-test, inter-rater) and validity (construct, convergent) of the instrument was examined using SPSS.

Results: The CP QOL- Child domain scores range from 1 (very unhappy) to 9 (very happy). On average, using a sub sample of 41 parents, children with poorer functioning (according to GMFCS level) score lower on physical wellbeing than children with better functioning (GMFCS Level I: M=5.3+1.68; II: M=5.7 +1.26; III: M=6.1 + 1.12; IV: M=4.5 + 1.08; V: M=4.6 +1.20. Parents report that children with better functioning are happier with their levels of participation (GMFCS Level I: M=6.29 +1.46; II: M=5.97 +0.76; III: M=6.55 +1.10; IV: M=4.9 +1.26; V: M=5.3+1.75) and level of pain (GMFCS Level I M=6.0 +1.51; II: M=5.1 +1.72; III: M=5.1 +0.89; IV: M=4.3 +0.84; V=4.2 +1.73). Factorial structure, reliability and other psychometric properties are being assessed with the complete sample.

Conclusion: The CP QOL- Child has been developed to ensure that it has excellent face and content validity. Current research has confirmed that the relevant domains of CP QOL- Child correlate significantly with functional levels of children with cerebral palsy. The research team will make emerging data on the CP QOL- Child available on the Internet (www.deakin.edu.au/hbs/hsd/research/sidh/index.php).