TY - JOUR
T1 - Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study
AU - Dickinson, Heather O.
AU - Parkinson, Kathryn N.
AU - Ravens-Sieberer, Ulrike
AU - Schirripa, Giorgio
AU - Thyen, Ute
AU - Arnaud, Catherine
AU - Beckung, Eva
AU - Fauconnier, Jérôme
AU - McManus, Vicki
AU - Michelsen, Susan I.
AU - Parkes, Jackie
AU - Colver, Allan F.
N1 - Funding Information:
We thank the families who participated in SPARCLE; the research associates of this study—Kerry Anderson, Barbara Caravale, Malin Carlsson, Eva Lise Eriksen, Delphine Fenieys, Bettina Gehring, Louise Gibson, Heidi Kiecksee, Ann Madden, and Ondine Pez—for their enthusiasm and dedication in contacting families and collecting high-quality data; and Michael Erhart for the analysis of differential item functioning. The study is funded by the European Union Research Framework 5 Programme, Grant number QLG5-CT-2002-00636.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2007/6/30
Y1 - 2007/6/30
N2 - Background: Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population. Methods: 1174 children aged 8-12 years were randomly selected from eight population-based registers of children with cerebral palsy in six European countries and 743 (63%) agreed to participate; one further region recruited 75 children from multiple sources. Researchers visited these 818 children. 318 (39%) with severe intellectual impairment could not self-report; 500 (61%) reported their QoL using KIDSCREEN, an instrument with scores in ten domains, each with SD=10. Multivariable regression was used to relate QoL to impairments, pain, and sociodemographic characteristics. Comparisons were made with QoL data from the general population. Findings: Impairments were not significantly associated with six KIDSCREEN domains. Comparison of least and most able groups showed that severely limited self-mobility was significantly associated with reduced mean score for physical wellbeing (7·6, 95% CI 2·7-12·4); intellectual impairment with reduced mean for moods and emotions (3·7, 1·5-5·9) and autonomy (3·3, 0·9-5·7); and speech difficulties with reduced mean for relationships with parents (4·5, 1·9-7·1). Pain was common and associated with lower QoL on all domains. Impairments and pain explained up to 3% and 7%, respectively, of variation in QoL. Children with cerebral palsy had similar QoL to children in the general population in all domains except schooling, in which evidence was equivocal, and physical wellbeing, in which comparison was not possible. Interpretation: Parents can be reassured that most children aged 8-12 years with cerebral palsy will have similar QoL to other children. This finding should guide social and educational policy to ensure that disabled children participate fully in society. Because of its association with QoL, children's pain should be carefully assessed.
AB - Background: Little is known about the quality of life (QoL) of disabled children. We describe self-reported QoL of children with cerebral palsy, factors that influence it, and how it compares with QoL of the general population. Methods: 1174 children aged 8-12 years were randomly selected from eight population-based registers of children with cerebral palsy in six European countries and 743 (63%) agreed to participate; one further region recruited 75 children from multiple sources. Researchers visited these 818 children. 318 (39%) with severe intellectual impairment could not self-report; 500 (61%) reported their QoL using KIDSCREEN, an instrument with scores in ten domains, each with SD=10. Multivariable regression was used to relate QoL to impairments, pain, and sociodemographic characteristics. Comparisons were made with QoL data from the general population. Findings: Impairments were not significantly associated with six KIDSCREEN domains. Comparison of least and most able groups showed that severely limited self-mobility was significantly associated with reduced mean score for physical wellbeing (7·6, 95% CI 2·7-12·4); intellectual impairment with reduced mean for moods and emotions (3·7, 1·5-5·9) and autonomy (3·3, 0·9-5·7); and speech difficulties with reduced mean for relationships with parents (4·5, 1·9-7·1). Pain was common and associated with lower QoL on all domains. Impairments and pain explained up to 3% and 7%, respectively, of variation in QoL. Children with cerebral palsy had similar QoL to children in the general population in all domains except schooling, in which evidence was equivocal, and physical wellbeing, in which comparison was not possible. Interpretation: Parents can be reassured that most children aged 8-12 years with cerebral palsy will have similar QoL to other children. This finding should guide social and educational policy to ensure that disabled children participate fully in society. Because of its association with QoL, children's pain should be carefully assessed.
UR - http://www.scopus.com/inward/record.url?scp=34250827091&partnerID=8YFLogxK
U2 - 10.1016/S0140-6736(07)61013-7
DO - 10.1016/S0140-6736(07)61013-7
M3 - Journal articles
C2 - 17604799
AN - SCOPUS:34250827091
SN - 0140-6736
VL - 369
SP - 2171
EP - 2178
JO - Lancet
JF - Lancet
IS - 9580
ER -
