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- Arnaud, Catherine, et al.
(författare)
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Parent-reported quality of life of children with cerebral palsy in Europe.
- 2008
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Ingår i: Pediatrics. - : American Academy of Pediatrics (AAP). - 1098-4275 .- 0031-4005. ; 121:1, s. 54-64
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Tidskriftsartikel (refereegranskat)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.
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| 3. |
- Fauconnier, Jérôme, et al.
(författare)
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Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study.
- 2009
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Ingår i: BMJ (Clinical research ed.). - 1468-5833. ; 338
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Tidskriftsartikel (refereegranskat)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.
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| 4. |
- Parkes, Jackie, et al.
(författare)
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Psychological problems in children with cerebral palsy: a cross-sectional European study.
- 2008
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Ingår i: Journal of child psychology and psychiatry, and allied disciplines. - : Wiley. - 1469-7610 .- 0021-9630. ; 49:4, s. 405-13
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To describe psychological symptoms in 8-12-year-old children with cerebral palsy; to investigate predictors of these symptoms and their impact on the child and family. DESIGN: A cross-sectional multi-centre survey. PARTICIPANTS: Eight hundred and eighteen children with cerebral palsy, aged 8-12 years, identified from population-based registers of cerebral palsy in eight European regions and from multiple sources in one further region. MAIN OUTCOME MEASURES: The Strengths and Difficulties Questionnaire (SDQ)(P4-16) and the Total Difficulties Score (TDS) dichotomised into normal/borderline (TDS < or = 16) versus abnormal (TDS > 16). STATISTICAL ANALYSIS: Multilevel, multivariable logistic regression to relate the presence of psychological symptoms to child and family characteristics. RESULTS: About a quarter of the children had TDS > 16 indicating significant psychological symptoms, most commonly in the domain Peer Problems. Better gross motor function, poorer intellect, more pain, having a disabled or ill sibling and living in a town were independently associated with TDS > 16. The risk of TDS > 16 was odds ratio (OR) = .2 (95% CI: .1 to .3) comparing children with the most and least severe functional limitations; OR = 3.2 (95%CI: 2.1 to 4.8) comparing children with IQ < 70 and others; OR = 2.7 (95% CI: 1.5 to 4.6) comparing children in severe pain and others; OR = 2.7 (95% CI:1.6 to 4.6) comparing children with another disabled sibling or OR = 1.8 (95%CI: 1.2 to 2.8) no siblings and others; OR = 1.8 (95% CI: 1.1 to 2.8) comparing children resident in a town and others. Among parents who reported their child to have psychological problems, 95% said they had lasted over a year, 37% said they distressed their child and 42% said they burdened the family at least 'quite a lot'. CONCLUSIONS: A significant proportion of children with cerebral palsy have psychological symptoms or social impairment sufficiently severe to warrant referral to specialist services. Care must be taken in the assessment and management of children with cerebral palsy to ensure psychological problems are not overlooked and potentially preventable risk factors like pain are treated effectively. The validity of the SDQ for children with severe disability warrants further assessment.
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