Parent-reported quality of life of children with cerebral palsy in Europe.
OBJECTIVE
The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy.


METHODS
Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains.


RESULTS
The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life.


CONCLUSIONS
The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.
Arnaud
Catherine
C
National Institute of Health and Medical Research, U558, Research Unit on Perinatal Epidemiology, Child Health and Development, Toulouse University III Paul Sabatier, Toulouse, France. carnaud@cict.fr
White-Koning
Melanie
M
Michelsen
Susan Ishoy
SI
Parkes
Jackie
J
Parkinson
Kathryn
K
Thyen
Ute
U
Beckung
Eva
E
Dickinson
Heather O
HO
Fauconnier
Jerome
J
Marcelli
Marco
M
McManus
Vicki
V
Colver
Allan
A
D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D002547:Cerebral Palsy / Q000175:diagnosis / Q000523:psychology* / Q000534:rehabilitation; D002648:Child; D003430:Cross-Sectional Studies; D002658:Developmental Disabilities / Q000453:epidemiology / Q000523:psychology*; D019988:Children with Disabilities / Q000523:psychology* / Q000534:rehabilitation; D005060:Europe; D005260:Female; D006801:Humans; D016014:Linear Models; D016015:Logistic Models; D008297:Male; D010287:Parent-Child Relations; D011788:Quality of Life; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D012928:Social Desirability; D012944:Social Support; D011795:Surveys and Questionnaires