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Cerebral palsy registries.

Abstract

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.

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BibTeXRIS

Christine Cans, Geraldine Surman, Vicki McManus, David Coghlan, Owen Hensey, Ann Johnson. 2004. Cerebral palsy registries.. https://doi.org/10.1016/j.spen.2004.01.004

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Psychometric properties of the quality of life questionnaire for children with CP.

This paper describes the development and psychometric properties of a condition-specific quality of life instrument for children with cerebral palsy (CP QOL-Child). A sample of 205 primary caregivers of children with CP aged 4 to 12 years (mean 8y 5mo) and 53 children aged 9 to 12 years completed the CP QOL-Child. The children (112 males, 93 females) were sampled across Gross Motor Function Classification System (GMFCS) levels (Level I=18%, II=28%, III=14%, IV=11%, V=27%). Primary caregivers also completed other measures of child health (Child Health Questionnaire; CHQ), QOL (KIDSCREEN), and functioning (GMFCS). Internal consistency ranged from 0.74 to 0.92 for primary caregivers and from 0.80 to 0.90 for child self-report. For primary caregivers, 2-week test-retest reliability ranged from 0.76 to 0.89. The validity of the CP QOL is supported by the pattern of correlations between CP QOL-Child scales with the CHQ, KIDSCREEN, and GMFCS. Preliminary statistics suggest that the child self-report questionnaire has acceptable psychometric properties. The questionnaire can be freely accessed at http://www.deakin.edu.ac/hmnbs/chase/cerebralpalsy/cp_qol_home.php.

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