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Allan Colver

Publications and source records attributed to Allan Colver.

8 recordsLinked to original sources
PubMed2006

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.

Bias↗
PubMed2006

Study protocol: SPARCLE--a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy.

BACKGROUND: SPARCLE is a nine-centre European epidemiological research study examining the relationship of participation and quality of life to impairment and environment (physical, social and attitudinal) in 8-12 year old children with cerebral palsy. Concepts are adopted from the International Classification of Functioning, Disability and Health which bridges the medical and social models of disability. METHODS/DESIGN: A cross sectional study of children with cerebral palsy sampled from total population databases in 9 European regions. Children were visited by research associates in each country who had been trained together. The main instruments used were KIDSCREEN, Life-H, Strength and Difficulties Questionnaire, Parenting Stress Index. A measure of environment was developed within the study. All instruments were translated according to international guidelines. The potential for bias due to non response and missing data will be examined. After initial analysis using multivariate regression of how the data captured by each instrument relate to impairment and socio-economic characteristics, relationships between the latent traits captured by the instruments will then be analysed using structural equation modelling. DISCUSSION: This study is original in its methods by directly engaging children themselves, ensuring those with learning or communication difficulty are not excluded, and by studying in quantitative terms the crucial outcomes of participation and quality of life. Specification and publication of this protocol prior to analysis, which is not common in epidemiology but well established for randomised controlled trials and systematic reviews, should avoid the pitfalls of data dredging and post hoc analyses.

Cerebral Palsy↗
PubMed2006

UKCP: a collaborative network of cerebral palsy registers in the United Kingdom.

Cerebral palsy (CP) is a relatively rare condition with enormous social and financial impact. Information about CP is not routinely collected in the United Kingdom. We have pooled non-identifiable data from the five currently active UK CP registers to form the UKCP database: birth years 1960-1997. This article describes the rationale behind this collaboration and the creation of the database. Data about 6910 children with CP are currently held. The mean annual prevalence rate was 2.1 [corrected] per 1000 live births for birth years 1986-1996. Where type is known, 91 per cent have spastic CP. Where data are available, nearly one-third of children have severely impaired lower limb function, and nearly a quarter have severely impaired upper limb function. As well as describing the range and complexity of motor and associated impairments, the pooled data from the UKCP database provide a platform for studies of aetiology, long-term outcomes, participation and service needs. The UKCP database is an important national resource for the surveillance of CP and the study of its epidemiology in the United Kingdom.

Adolescent↗
PubMed2005

A shared framework and language for childhood disability.

The social model of disability and the new sociology of childhood emphasize respectively the relevance of the environment to participation and the importance of quality of life. Such ideas can be readily understood by and shared among parents, young disabled people, professionals, and planners. They also make clearer what professionals are trying to do when supporting disabled children and their families. This article discusses these concepts and shows how they must be expressed in quantitative terms if they are to influence research, planning, and clinical practice.

Biomedical Research↗
PubMed2005

Regional variation in survival of people with cerebral palsy in the United Kingdom.

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.

Adolescent↗