Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey

J. Fauconnier, H. Dickinson, E. Beckung, M. Marcelli, V. McManus, S.I. Michelsen, Jacqueline Parkes, K. Parkinson, U. Thyen, C. Arnaud, A. Colver

Research output: Contribution to journalArticle

154 Citations (Scopus)

Abstract

Objectives
To evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.

Design
Cross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.

Setting
Eight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources.

Participants
1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63%) joined in the study; the further region recruited 75 children.

Main outcome measure
Children’s participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation.

Results
Children with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals.

Conclusions
Participation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.
Original languageEnglish
Article number b1458
Number of pages12
JournalBritish Medical Journal
Volume338
Issue number7703
DOIs
Publication statusPublished - 24 Apr 2009

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Cerebral Palsy
Cross-Sectional Studies
Pain
Registries
Motor Skills
Aptitude
Denmark
Legislation
Walking
Parents
Communication
Interviews

Cite this

Fauconnier, J., Dickinson, H., Beckung, E., Marcelli, M., McManus, V., Michelsen, S. I., ... Colver, A. (2009). Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey. British Medical Journal, 338(7703), [ b1458]. https://doi.org/10.1136/bmj.b1458
Fauconnier, J. ; Dickinson, H. ; Beckung, E. ; Marcelli, M. ; McManus, V. ; Michelsen, S.I. ; Parkes, Jacqueline ; Parkinson, K. ; Thyen, U. ; Arnaud, C. ; Colver, A. / Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey. In: British Medical Journal. 2009 ; Vol. 338, No. 7703.
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abstract = "ObjectivesTo evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.DesignCross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.SettingEight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources.Participants1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63{\%}) joined in the study; the further region recruited 75 children.Main outcome measureChildren’s participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation.ResultsChildren with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals.ConclusionsParticipation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.",
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Fauconnier, J, Dickinson, H, Beckung, E, Marcelli, M, McManus, V, Michelsen, SI, Parkes, J, Parkinson, K, Thyen, U, Arnaud, C & Colver, A 2009, 'Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey', British Medical Journal, vol. 338, no. 7703, b1458. https://doi.org/10.1136/bmj.b1458

Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey. / Fauconnier, J.; Dickinson, H.; Beckung, E.; Marcelli, M.; McManus, V.; Michelsen, S.I.; Parkes, Jacqueline; Parkinson, K.; Thyen, U.; Arnaud, C.; Colver, A.

In: British Medical Journal, Vol. 338, No. 7703, b1458, 24.04.2009.

Research output: Contribution to journalArticle

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T1 - Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey

AU - Fauconnier, J.

AU - Dickinson, H.

AU - Beckung, E.

AU - Marcelli, M.

AU - McManus, V.

AU - Michelsen, S.I.

AU - Parkes, Jacqueline

AU - Parkinson, K.

AU - Thyen, U.

AU - Arnaud, C.

AU - Colver, A.

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N2 - ObjectivesTo evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.DesignCross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.SettingEight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources.Participants1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63%) joined in the study; the further region recruited 75 children.Main outcome measureChildren’s participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation.ResultsChildren with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals.ConclusionsParticipation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.

AB - ObjectivesTo evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.DesignCross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.SettingEight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources.Participants1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63%) joined in the study; the further region recruited 75 children.Main outcome measureChildren’s participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation.ResultsChildren with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals.ConclusionsParticipation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.

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VL - 338

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JF - BMJ

SN - 1756-1833

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Fauconnier J, Dickinson H, Beckung E, Marcelli M, McManus V, Michelsen SI et al. Participation of 8-12 year old children with cerebral palsy: a cross-sectional European Survey. British Medical Journal. 2009 Apr 24;338(7703). b1458. https://doi.org/10.1136/bmj.b1458