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

Heather Dickinson, Kathryn Parkinson, Vicki McManus, Catherine Arnaud, Eva Beckung, Jérôme Fauconnier, Susan I Michelsen, Jacqueline Parkes, Giorgio Schirripa, Ute Thyen, Allan Colver

Research output: Contribution to journalArticle

36 Citations (Scopus)
176 Downloads (Pure)

Abstract

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
Original languageEnglish
Article number273
Number of pages12
JournalBMC Public Health
Volume6
DOIs
Publication statusPublished - 06 Nov 2006

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Fingerprint Dive into the research topics of 'Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy'. Together they form a unique fingerprint.

  • Cite this

    Dickinson, H., Parkinson, K., McManus, V., Arnaud, C., Beckung, E., Fauconnier, J., Michelsen, S. I., Parkes, J., Schirripa, G., Thyen, U., & Colver, A. (2006). Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy. BMC Public Health, 6, [273]. https://doi.org/10.1186/1471-2458-6-273