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G1 PARENT REPORTED QUALITY OF LIFE OF CHILDREN AGED 8–12 YEARS WITH CEREBRAL PALSY ACROSS EUROPE
M. White-Koning1, C. Arnaud1, A. Colver2.1INSERM, Toulouse, France; 2University of Newcastle, Newcastle, UK
Aims: Quality of life (QoL) should be self reported and subjective. However in children with intellectual impairment, it may be necessary to use proxy parental reports—and for comparisons across the range of intellectual ability to record also proxy reports for children who can self complete. This paper describes Qol as reported by their parents of children with cerebral palsy (CP) and explores the extent to which age, socioeconomic factors and impairments (including intellectual impairment) influence it.
Methods: Within a wider study of the relationship of participation and QoL to the environment, 818 children with CP were visited at home in seven European countries (including UK and Ireland). KIDSCREEN was administered—a QoL instrument, suitable for parent completion, developed from focus group work with children across Europe. It has 10 domains including emotion, autonomy, friendships, bullying, feelings/self perception, and school life. For each domain, multivariate logistic regression was used to compare children in the lowest quartile with others. Associations significant at 5% level or less are reported.
Results: Parent reports were obtained from the whole sample of 818 children, aged 8–12 years: IQ⩾70 47%, 50⩽IQ<70 23%, IQ<50 30%: GMFCS I 31%, II 20%, III 17%, IV 14%, V 18%. Across all domains, parents consider older children and those with pain to have lower QoL. Intellectual impairment, severe visual impairment, or frequent seizures give rise to lower QoL in the friendship domain; for emotion and feelings, children with severe intellectual impairment have better QoL than those without it. Unsurprisingly, autonomy is lower in children with severe motor impairment. Although children with moderate motor impairment have lower self-perception, those with severe motor impairment have better self-perception than children with mild impairment. Children …