Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study

Heather O. Dickinson, Kathryn N Parkinson, Ulrike Ravens-Sieberer, Giorgio Schirripa, Ute Thyen, Catherine Arnaud, Eva Beckung, Jérôme Fauconnier, Vicki McManus, Susan I Michelsen, Jackie Parkes, Allan F Colver

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Abstract

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.
Original languageEnglish
Pages (from-to)2171-2178
Number of pages8
JournalThe Lancet
Volume369
Issue number9580
DOIs
Publication statusPublished - 30 Jun 2007

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Cerebral Palsy
Cross-Sectional Studies
Quality of Life
Pain
Disabled Children
Population
Public Policy
Self Report
Registries
Emotions
Parents
Research Personnel

Cite this

Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., ... Colver, A. F. (2007). Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study. The Lancet, 369(9580), 2171-2178. https://doi.org/10.1016/S0140-6736(07)61013-7
Dickinson, Heather O. ; Parkinson, Kathryn N ; Ravens-Sieberer, Ulrike ; Schirripa, Giorgio ; Thyen, Ute ; Arnaud, Catherine ; Beckung, Eva ; Fauconnier, Jérôme ; McManus, Vicki ; Michelsen, Susan I ; Parkes, Jackie ; Colver, Allan F. / Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study. In: The Lancet. 2007 ; Vol. 369, No. 9580. pp. 2171-2178.
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abstract = "BackgroundLittle 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.Methods1174 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.FindingsImpairments 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.InterpretationParents 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.",
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Dickinson, HO, Parkinson, KN, Ravens-Sieberer, U, Schirripa, G, Thyen, U, Arnaud, C, Beckung, E, Fauconnier, J, McManus, V, Michelsen, SI, Parkes, J & Colver, AF 2007, 'Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study', The Lancet, vol. 369, no. 9580, pp. 2171-2178. https://doi.org/10.1016/S0140-6736(07)61013-7

Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study. / Dickinson, Heather O.; Parkinson, Kathryn N; Ravens-Sieberer, Ulrike; Schirripa, Giorgio; Thyen, Ute; Arnaud, Catherine; Beckung, Eva; Fauconnier, Jérôme ; McManus, Vicki; Michelsen, Susan I; Parkes, Jackie; Colver, Allan F.

In: The Lancet, Vol. 369, No. 9580, 30.06.2007, p. 2171-2178.

Research output: Contribution to journalArticle

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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

PY - 2007/6/30

Y1 - 2007/6/30

N2 - BackgroundLittle 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.Methods1174 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.FindingsImpairments 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.InterpretationParents 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 - BackgroundLittle 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.Methods1174 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.FindingsImpairments 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.InterpretationParents 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.

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Dickinson HO, Parkinson KN, Ravens-Sieberer U, Schirripa G, Thyen U, Arnaud C et al. Self-reported quality of life of 8-12 year old children with cerebral palsy: a cross-sectional European Study. The Lancet. 2007 Jun 30;369(9580):2171-2178. https://doi.org/10.1016/S0140-6736(07)61013-7