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To examine parent-professional agreement in proxy-reports of child quality of life (QoL) and the factors associated with low child QoL in children with cerebral palsy (CP) and associated intellectual impairment. Professional (teacher, therapist, or residential carer) and parent reports of QoL for 204 children (127 males, 77 females, mean age 10y 4mo [SD 1y 6mo]; range 8-12y) with CP and IQ less than or equal to 70 were obtained in 2004 to 2005 in nine European regions, using the KIDSCREEN questionnaire. Parent-professional agreement was studied using correlation and mean differences; multilevel logistic regression was used to determine factors influencing QoL reports and agreement. The mean parent-reported scores of child QoL were significantly higher than the professional reports in the Psychological well-being domain and significantly lower for Social support. The average frequency of disagreement (parent-professional difference greater than 0.5SD of scores) over all domains was 62%. High levels of stress in parenting negatively influenced parent reports of child QoL compared with professional reports, while child pain was associated with professionals rating lower than parents. Proxies do not always agree when reporting the QoL of children with severe disabilities. Parental well-being and child pain should be taken into account in the interpretation of QoL reports in such children. (Contains 3 tables and 1 figure.)

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)[superscript P4-16] and the Total Difficulties Score (TDS) dichotomised into normal/borderline (TDS less than or equal to 16) versus abnormal (TDS greater than 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 greater than 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 greater than 16. The risk of TDS greater than 16 was odds ratio (OR) = 0.2 (95% CI: 0.1 to 0.3) comparing children with the most and least severe functional limitations; OR = 3.2 (95% CI: 2.1 to 4.8) comparing children with IQ less than 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.

A prospective study of the families of young severely disabled children applying to a non-governmental organization for financial support examined the respective contributions of a child's intrinsic impairment and the family's environment to their participation. The study population comprised the families of 600 children of median age 2 years 8 months (range 1y-12y 1mo), of whom 46% had autistic or severe behaviour difficulties, 12% other learning disabilities, 6.8% cerebral palsy, and 10% non-neurological causes of severe disability. Intrinsic impairment was measured with the Health Utilities Index (HUI); environmental factors using a novel instrument, the European Child Environment Questionnaire (ECEQ); and participation of child and family using the Lifestyle Assessment Questionnaire. Principal components analysis was used to examine interrelationships. A five-component model explains 50% of the variance in the ECEQ. The first component, ECEQ1, reflects the support a family receives from professional services and family. HUI and ECEQ1 were independently associated with participation (p less than 0.0001) with comparable effect sizes. We conclude that the participation of young severely disabled children is affected to similar extents by intrinsic impairment and environmental factors such as services, support, and attitudes. (Contains 4 tables and 1 footnote.)

Objectives. Regional variation in survival of people who have cerebral palsy (CP) has been observed but not previously investigated in detail. In addition to true differences, variations in the methods and definitions used, completeness of ascertainment, and the role of potential confounding factors all have been proposed as possible explanations for these observed variations. Our aim was to assess the regional differences in survival of young people with CP and the effect on survival of socioeconomic differences after adjustment for variations in level of impairment and birth characteristics. Methods. Survival patterns for young people with CP were calculated using information from a collaborative database. This database consisted of registrations of children who were born with CP in 5 geographically defined areas in the United Kingdom between 1980 and 1996. Notification of subsequent deaths was provided by the relevant births and death register. We consider the effects of birth characteristics, socioeconomic status, and severity of CP on survival. Results. There were 325 deaths among the 4007 cases of CP identified. The proportion of affected children who survived to 20 years of age ranged from 85% (Mersey-side and Cheshire, male individuals) to 94% (North of England, male individuals). Multivariate modeling showed that the severity of impairment had the biggest impact on survival and that additional contributions were made by birth weight and socioeconomic status but that after such adjustments regional differences were no longer significant. Conclusions. The number and the severity of impairments are the best predictors of survival in young people with CP. After adjustment for the number of impairments, children who were born in affluent areas and had a low birth weight have an increased risk for death over those who were born with a normal birth weight. The same does not hold, however, for those who were born in deprived areas. survival, impairments, birth weight, socioeconomic status. ABBREVIATIONS. CP, cerebral palsy; UKCP, United Kingdom Collaborative Network of Cerebral Palsy Registers; CI, confidence interval., Previous work has reported that most children with cerebral palsy (CP) survive to adulthood, unless they have severe motor and cognitive impairment. (1-9) Some variations have been observed in reported [...]