Background: The limitations of reliable and accessible UK national and local quantitative data on the prevalence of childhood disability and the characteristics and circumstances of disabled children and their households have been recognized for some time. This paper reports the findings from a study that scoped and quality-assessed existing quantitative UK national and regional data sets on disabled children and their families.
Methods: A comprehensive search of relevant data sources with information on disabled children was undertaken. Data sources were evaluated with reference to: disability definitions and questions; potential to generate nationally representative prevalence estimates of disabled children; study design; population coverage; sampling issues; social and demographic data; appropriateness for identifying childhood as opposed to adult disability.
Results: Thirty-seven data sources with information on childhood disability were identified, of which 30 met the inclusion criteria: nine cross-sectional surveys, nine longitudinal and panel studies, seven administrative data sets, four specific condition databases and one was another type. Definitions and questions varied across data sources. Long-standing illness and limiting long-standing illness were the most consistently used definitions. Repeated cross-sectional surveys were found to be most appropriate for estimating overall prevalence but, with the exception of the Population Census, sample sizes were too small to study prevalence and characteristics by some population sub-groups such, including age by year, minority ethnic status and socio-economic position. Few data sources included questions appropriate for identifying childhood as opposed to adult disability or collected information from disabled children themselves.
Conclusions: Our findings summarize the currently available quantitative data sources on childhood disability and highlight the limitations. We make recommendations for the future development of more robust childhood disability data and issues requiring further research. To assist policy makers and service providers to make use of current data sources we have produced a brief online guide based on our findings.