Published online December 31, 2007
PEDIATRICS Vol. 121 No. 1 January 2008, pp. 54-64 (doi:10.1542/peds.2007-0854)

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ARTICLE

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

Catherine Arnaud, MD^a,b, Melanie White-Koning, PhD^a, Susan Ishoy Michelsen, MD, PhD^c, Jackie Parkes, PhD, BNurs^d, Kathryn Parkinson, PhD^e, Ute Thyen, MD^f, Eva Beckung, PhD^g, Heather O. Dickinson, BSc, PhD^h, Jerome Fauconnier, MDⁱ, Marco Marcelli, MD^j, Vicki McManus, BA, RGN, RCN^k and Allan Colver, MD, FRCPCH^l

^a National Institute of Health and Medical Research (INSERM), U558, Research Unit on Perinatal Epidemiology, Child Health and Development, Toulouse University III Paul Sabatier, Toulouse, France
^b University Hospital (CHU) Toulouse, Epidemiology Service, Toulouse, France
^c National Institute of Public Health, Copenhagen, Denmark
^d Queen's University Belfast, School of Nursing and Midwifery, Belfast, United Kingdom
^e School of Clinical Medical Sciences
^h School of Population and Health Sciences
^l Sir James Spence Institute, Newcastle University, Newcastle-upon-Tyne, United Kingdom
^f University Hospital Schleswig-Holstein, Children's Hospital, Lubeck, Germany
^g Göteborg University, Queen Silvia Children's Hospital, Göteborg, Sweden
ⁱ Joseph Fourier University, Laboratoire Techniques de l'Ingénierie Médicale et de la Complexité (TIMC), Équipe Epidemiology and Methods in Clinical Research (ThEMAS), Grenoble, France
^j Azienda Sanitaria Locale Viterbo, Viterbo, Italy
^k Enable Ireland, Lavanagh Centre, Cork, Ireland

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.

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Key Words: cerebral palsy • child • quality of life • proxy measures • gross motor function classification system • intellectual impairment

Abbreviations: CP—cerebral palsy • QoL—quality of life • GMFCS—gross motor function classification system • SPARCLE—Study of Participation of Children with Cerebral Palsy Living in Europe

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Accepted Jun 22, 2007.

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