Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe

Catherine Arnaud, Melanie White-Koning, Susan Ishoy Michelsen, Jackie Parkes, Kathryn Parkinson, Ute Thyen, Eva Beckung, Heather O. Dickinson, Jerome Faunconnier, Marco Marcelli, Vicki McManus, Allan Colver

Research output: Contribution to journalArticle

112 Citations (Scopus)

Abstract

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.
Original languageEnglish
Pages (from-to)54-64
Number of pages11
JournalPediatrics
Volume121
Issue number1
DOIs
Publication statusPublished - 01 Jan 2008

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Cerebral Palsy
Quality of Life
Self Concept
Parents
Social Distance
Aptitude
Emotions
Cross-Sectional Studies
Economics
Psychology
Pain

Cite this

Arnaud, C., White-Koning, M., Michelsen, S. I., Parkes, J., Parkinson, K., Thyen, U., ... Colver, A. (2008). Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe. Pediatrics, 121(1), 54-64. https://doi.org/10.1542/peds.2007-0854
Arnaud, Catherine ; White-Koning, Melanie ; Michelsen, Susan Ishoy ; Parkes, Jackie ; Parkinson, Kathryn ; Thyen, Ute ; Beckung, Eva ; Dickinson, Heather O. ; Faunconnier, Jerome ; Marcelli, Marco ; McManus, Vicki ; Colver, Allan. / Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe. In: Pediatrics. 2008 ; Vol. 121, No. 1. pp. 54-64.
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Arnaud, C, White-Koning, M, Michelsen, SI, Parkes, J, Parkinson, K, Thyen, U, Beckung, E, Dickinson, HO, Faunconnier, J, Marcelli, M, McManus, V & Colver, A 2008, 'Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe', Pediatrics, vol. 121, no. 1, pp. 54-64. https://doi.org/10.1542/peds.2007-0854

Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe. / Arnaud, Catherine; White-Koning, Melanie; Michelsen, Susan Ishoy; Parkes, Jackie; Parkinson, Kathryn; Thyen, Ute; Beckung, Eva; Dickinson, Heather O.; Faunconnier, Jerome; Marcelli, Marco; McManus, Vicki; Colver, Allan.

In: Pediatrics, Vol. 121, No. 1, 01.01.2008, p. 54-64.

Research output: Contribution to journalArticle

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T1 - Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe

AU - Arnaud, Catherine

AU - White-Koning, Melanie

AU - Michelsen, Susan Ishoy

AU - Parkes, Jackie

AU - Parkinson, Kathryn

AU - Thyen, Ute

AU - Beckung, Eva

AU - Dickinson, Heather O.

AU - Faunconnier, Jerome

AU - Marcelli, Marco

AU - McManus, Vicki

AU - Colver, Allan

PY - 2008/1/1

Y1 - 2008/1/1

N2 - 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.

AB - 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.

U2 - 10.1542/peds.2007-0854

DO - 10.1542/peds.2007-0854

M3 - Article

VL - 121

SP - 54

EP - 64

JO - Pediatrics

JF - Pediatrics

SN - 0031-4005

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Arnaud C, White-Koning M, Michelsen SI, Parkes J, Parkinson K, Thyen U et al. Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe. Pediatrics. 2008 Jan 1;121(1):54-64. https://doi.org/10.1542/peds.2007-0854