Association between participation in life situations of children with cerebral palsy and their physical, social, and attitudinal environment: a cross-sectional multicenter European study.

OBJECTIVE: To evaluate how participation of children with cerebral palsy (CP) varied with their environment. DESIGN: Home visits to children. Administration of Assessment of Life Habits and European Child Environment Questionnaires. Structural equation modeling of putative associations between specific domains of participation and environment, while allowing for severity of child's impairments and pain. SETTING: European regions with population-based registries of children with CP. PARTICIPANTS: Children (n=1174) aged 8 to 12 years were randomly selected from 8 population-based registries of children with CP in 6 European countries. Of these, 743 (63%) agreed to participate; 1 further region recruited 75 children from multiple sources. Thus, there were 818 children in the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation in life situations. RESULTS: For the hypothesized associations, the models confirmed that higher participation was associated with better availability of environmental items. Higher participation in daily activities-mealtimes, health hygiene, personal care, and home life-was significantly associated with a better physical environment at home (P<.01). Mobility was associated with transport and physical environment in the community. Participation in social roles (responsibilities, relationships, recreation) was associated with attitudes of classmates and social support at home. School participation was associated with attitudes of teachers and therapists. Environment explained between 14% and 52% of the variation in participation. CONCLUSIONS: The findings confirmed the social model of disability. The physical, social, and attitudinal environment of disabled children influences their participation in everyday activities and social roles.

The science of intervention development for type 1 diabetes in childhood: systematic review.

AIM: This paper is a report of a review of the science of intervention development for type 1 diabetes in childhood and its implications for improving health outcomes in children, adolescents, and/or their families. BACKGROUND: Previous reviewers have identified insufficient evidence to support the application of effective interventions for type 1 diabetes in clinical practice. The need for quality randomized controlled trials to address shortcomings in previous study designs has been highlighted as a priority for future intervention research. However, there is also a need to consider the scientific development of interventions, which to date has received little attention. DATA SOURCE: A search for published randomized controlled trials over 5 years (2004-2008) was conducted in electronic databases (Medline, CINAHL, Cochrane Library, Psychinfo, ERIC). Reference lists of papers identified from electronic searches were examined for additional papers. METHODS: A systematic review was conducted. Studies were included if (i) an intervention for managing any aspect of type 1 diabetes was implemented, (ii) children, adolescents and/or their families were sampled, (iii) a randomized controlled trial, (iv) published in English. RESULTS: Fourteen randomized controlled trials were reviewed on education (n = 7), psychosocial (n = 5) and family therapy (n = 2) interventions. Compared to education interventions, family therapy and most psychosocial interventions were developed with greater scientific rigour, and demonstrated promising effects on more health outcomes measured. CONCLUSION: Interventions developed within clearly-defined scientific criteria offer potential for improving health outcomes in children and adolescents with type 1 diabetes and their families. Future reviews on interventions for type 1 diabetes in childhood need to include criteria for assessing the science of intervention development.

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

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.

Psychological problems in children with cerebral palsy: a cross-sectional European study.

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.

Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy.

BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. METHODS: 1,174 children aged 8-12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. RESULTS: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. CONCLUSION: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias.

SCPE work, standardization and definition--an overview of the activities of SCPE: a collaboration of European CP registers.

The main aim of the Surveillance of Cerebral Palsy in Europe (SCPE) network was to develop a central database of cerebral palsy (CP) cases across Europe. Monitoring trends in prevalence rates of CP should contribute to collaborative studies on risk factors or quality of life for children living with CP. A multi-centre collaboration of CP registries used a clear definition of CP to accurately and consistently identify cases of CP. The rate of CP within the collaboration varied from 1.5 to 3 per 1000 live births. For the birth cohort 1980 to 1996 (n=9128), 53.9% of the CP children had a bilateral spastic CP, 31.0% had unilateral spastic CP, 6.6% were dyskinetic and 4.1% ataxic. Among CP children, 20.4% had a birth weight less than 1500 g and 25.5% were born before 32 weeks gestational age. Intellectual impairment corresponding to an IQ<50 was found in 29.5% of CP children. The proportion of CP children unable to walk, even with aids, was 30.3%. Twelve and a half percent of CP children were known to have a severe visual impairment. It was concluded that registers are the best means to implement epidemiological research into CP.

Cerebral palsy registries.

Cerebral palsy (CP) registers appear to be appropriate tools for answering questions regarding the prevalence and characteristics of this common childhood disability. Registers are population databases issuing from multiple sources, relying on a clear definition and inclusion and exclusion criteria of CP, and requiring a mix of skills with the collaboration of obstetricians, pediatricians, and epidemiologists. In Europe alone there are 18 different CP registers or population data collections on CP, and collaborative research efforts exist through a European network. Data collection on CP has also been done in Australia (register), the United States (surveys), and Canada (register). Beside monitoring trends, other public health contributions of CP registers might be to reduce the frequency of CP and to improve the quality of life of children with CP. CP registers are useful to clinicians by enabling them to identify subgroups of children requiring specific etiologic investigations, and also to provide more accurate information to the parents of children with CP.

Access of children with cerebral palsy to the physical, social and attitudinal environment they need: a cross-sectional European study.

PURPOSE: The UN Convention on the Rights of Persons with Disabilities requires states 'to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, transportation, information and communications.' We explored whether this convention was respected for disabled children in Europe. METHOD: One thousand one-hundred and seventy-four children aged 8-12 years were randomly selected from population-based registers of children with cerebral palsy in eight European regions. 743 children joined the study; one further region recruited 75 children from multiple sources. Researchers visited these 818 children and administered the European Child Environment Questionnaire, which records parents' perceptions of availability of the physical, social and attitudinal environment needed in home, school and community. Multilevel, multivariable regression related child access on these domains to their impairments and socio-demographic characteristics. RESULTS: Children with more impaired walking ability had less access to the physical environment, transport and social support they needed than other children. They also experienced less favourable attitudes from family and friends. However, attitudes of teachers and therapists were similar for children with all levels of impairment. The access of children, across all impairment severities, to their needed environment showed significant variation between regions (p ≤ 0.0001), some regions consistently providing better access on most or all domains. CONCLUSION: European states need to substantially improve environmental access for disabled children in order to meet their obligations under UN Conventions. In some regions, many environmental factors should and realistically could be changed. Legislation and regulation should be directed to making this happen. Local environmental planners and health and social service providers should listen carefully to parents to address mismatches between policy intentions and parental experience.

Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study.

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.

Frequency of participation of 8-12-year-old children with cerebral palsy: a multi-centre cross-sectional European study.

Participation in home, school and community is important for all children; and little is known about the frequency of participation of disabled children. Frequency of participation is a valuable outcome measure for evaluating habilitation programmes for disabled children and for planning social and health services. We investigated how frequency of participation varied between children with cerebral palsy and the general population; and examined variation across countries to understand better how the environmental factors such as legislation, public attitudes and regulation in different countries might influence participation. We undertook a multi-centre, population-based study in children with and without cerebral palsy. Working from the Life-H instrument, we developed a questionnaire to capture frequency of participation in 8-12-year-old children. In nine regions of seven European countries, parents of 813 children with cerebral palsy and 2939 children from the general populations completed the questionnaire. Frequency of participation for each question was dichotomised about the median; multivariable logistic regressions were carried out. In the general population, frequency of participation varied between countries. Children with cerebral palsy participated less frequently in many but not all areas of everyday life, compared with children from the general population. There was regional variation in the domains with reduced participation and in the magnitude of the differences. We discuss how this regional variation might be explained by the different environments in which children live. Attending a special school or class was not associated with further reduction in participation in most areas of everyday life.

Parent-reported quality of life of children with cerebral palsy in Europe.

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.

Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.

OBJECTIVES: The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life. METHODS: This study was conducted in 2004-2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0-100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe. RESULTS: The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child's quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents' perception of their child's quality of life, whereas the main factor explaining parents' ratings of children's quality of life higher than the children themselves is self-reported severe child pain. CONCLUSIONS: This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life.

Cerebral palsy of post-neonatal origin: characteristics and risk factors.

We aimed to study the rates and trends over time of children with cerebral palsy (CP) of post-neonatal origin (arising more than 28 days after birth, and before the age of 25 months), to examine their aetiology and associated significant risk factors, and to compare them with other CP cases. Children with post-neonatal CP born 1976-90 were identified from a European database and seven registers were included (Surveillance of Cerebral Palsy in Europe collaboration). Using a previously published classification it was possible to allocate an aetiology to 99% of cases. The prevalence rate of post-neonatal CP was 1.26 per 10 000 live births and a significant decrease was observed over the period 1976-90 (P = 0.011). Infection accounted for 50%, vascular episodes for 20% and head injury for 18% of the cases. Although there has been little change in the profile of underlying causes in this period, within the infection group, a significant downward trend was observed for Reye's syndrome (P < 0.001) and non-central nervous system (non-CNS) infection (P = 0.004), but not for meningitis/encephalitis. There was evidence of some increased risk of post-neonatal CP among children with low birthweight (<2500 g) (P < 0.001). Overall children with CP of post-neonatal origin showed a more severe functional pattern than non-post-neonatal CP children. In order to ascertain the impact of public health and other preventive measures aimed at reducing the frequency of brain injury in the first 2 years after birth, it is necessary to continue to monitor the frequency and characteristics of children with post-neonatal CP into the 1990s.