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The prevalence and survival of children with cerebral palsy in British Columbia Lai, Benjamin Chao-Liang

Abstract

The evidence that trends in the prevalence of cerebral palsy (CP) and survival rate of children with CP have increased in most industrialized countries over the past four decades was noted through systematic review of a number of current population-based studies. The biggest difficulty in evaluating these papers was the lack of a standardized protocol. Researchers working in different countries used different definitions, different criteria of inclusion and ascertainment, and different prognostic factors for survival. The information presented was not easily comparable and could not be readily extrapolated to the situation in British Columbia and Canada. As well, there was very limited information about the prevalence of CP and the survival of persons with CP and its associated problems in British Columbia. To evaluate the prevalence of CP, survival rates, and associated problems in British Columbia, a retrospective study is proposed which links the information identified through two databases: the databases of the Health Surveillance Registry and the linked databases of the Centre for Health Services and Policy Research. Additional information relating to etiologic factors, functional abilities, prognostic factors and management will be extracted from the medical charts of patients using a data collection protocol designed as part of this thesis the Cerebral Palsy Chart Review Protocol. The feasibility of using the Cerebral Palsy Chart Review Protocol was tested on a convenience sample of hospital charts of children with CP. After reviewing sample charts, additional sections such as visual and hearing impairments were added, neonatal record evaluation forms were simplified, the sections on feeding and orthopaedic problems were modified, and the parameters for evaluating the severity of CP were expanded to include ambulation skills, mental ability, manual dexterity, and visual and hearing impairments. Although the proposed provincial retrospective study has some limitations and methodological issues, overall the Chart Review Protocol is felt to be a feasible extraction method for a broader population review of cases. The proposed study will provide important information for health, education, social service and community planners and will be helpful in assessing methods and techniques in management and prevention of CP.

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