Quality of life among children with cerebral palsy in Europe: results of the SPARCLE survey.

Introduction - The European SPARCLE project explores the influence of the environment on the quality of life (QOL) of a representative population of children aged 8 to 12 with cerebral palsy (CP). We examined the determinants of QOL, regardless of the severity of the disability, based on responses from children, parents, and professionals. Methods - We used a generic tool (Kidscreen) that explores 10 dimensions of QoL. The children’s QoL was reported by 500 children (61%) capable of self-expression, 204 professionals (for the most severely affected children), and parents in all cases (n=818). Results - On average, children with cerebral palsy (CP) who were able to express themselves reported a QoL similar to that of children in the general population. Disabilities accounted for a significant portion of the variation in QoL scores; pain was consistently associated with a decline in QoL. The agreement between the responses of children and parents on the one hand, and between parents and professionals on the other, was low, highlighting differences in perspective. Discussion - These results confirm the need to view children with disabilities first and foremost as children with the same rights as others to participate fully in social life. (R.A.)

Author(s): Sentenac M, Ehlinger V, Arnaud C

Publishing year: 2010

Pages: 194-7

Weekly Epidemiological Bulletin, 2010, n° 16-17, p. 194-7

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