DETERMINANTS OF QUALITY OF LIFE IN SCHOOL AGE CHILDREN WITH CEREBRAL PALSY

Objectives: The primary objective of this study is to characterize the quality of life of children with cerebral palsy (CP) and identify factors associated with physical or psychosocial well-being. Methods: In this study, a consecutive sample of children (6–12 years) with CP was recruited. A parent and when feasible, the child completed the Child Health Questionnaire (CHQ) and the PedsQL. Predictor variables included: 1) biomedical (type of CP, severity using Gross Motor Function Classification System-GMFCS, microcephaly, neonatal difficulties); 2) developmental (IQ, behaviour problems using Strengths & Difficulties Questionnaire); 3) functional (motor function using GMFM, Vineland Scale-VABS); 4) personal (gender, age, motivation); and 5) environmental (school setting, family function using Impact on Family Scale-IOF and Parenting Stress Index-PSI).

Results: Of 92 participants, 82 parents and 55 children completed questionnaires. Mean age was 9.4±2.0 years, 62% were male, and on GMFCS: 49% level I, 28% level II-IV, 23% level V. Mean CHQ physical well-being score was 40.4±16.5, 47.3%<40; and mean psychosocial well-being score was 43.3±11.1, 52.7%<40. Using PedsQL, 59.4%-61.8% had physical and psychosocial summary scores <1 SD below the mean. PedsQL scores between parents and children correlated (physical: r=0.63, p<.0001; psychosocial: r=0.38, p=0.01), but children rated themselves higher. Physical well-being correlated with GMFCS (p<.0001), GMFM (p<.0001), functional limitations on VABS subscales (p<.01), and IOF (p<.05). Furthermore, low physical functioning was associated with microcephaly, neonatal difficulties, quadriplegia, low motivation and segregated schooling. Psychosocial well-being was significantly associated (p<.001) with parental stress, motivation and behavioural difficulties.

Conclusion: Quality of life is variable in children with CP, half reporting good life quality. Physical well-being but not psychosocial well-being, is associated with severity and functional limitations. Family functioning, child's motivation and behaviour are important predictors of social-emotional adaptation. Determinants of life quality may guide resource needs to optimize well-being of the child and family.

Acknowledgements: This project was funded by the United Cerebral Palsy Research and Educational Foundation.