Predictors of drop-out in a multi-centre longitudinal study of participation and quality of life of children with cerebral palsy

H. Dickinson, M. Rapp, C. Arnaud, M. Carlsson, A.F. Colver, J. Fauconnier, A. Lyons, M. Marcelli, S.I. Michelsen, Jacqueline Parkes, K. Parkinson

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Abstract

Background: SPARCLE is a study across nine European regions which examines the predictors of participation and
quality of life of children with cerebral palsy. Children and their families were initially interviewed in 2004/2005
when the children were aged 8–12 years (SPARCLE1); they were approached again in 2009/2010 at age 13–17 years
(SPARCLE2). The objective of this report is to assess potential for bias due to family non-response in SPARCLE2.
Logistic regression was used to assess whether socio-demographic factors, parental stress and child impairment
were related to non-response, both overall and by category (failure to trace families, death of child, traced families
declining to participate).
Results: Of the 818 families who participated in SPARCLE1, 224/818 (27%) did not participate in SPARCLE2. 51/818
(6%) were not traced. Among the 767 traced families, 32/767 (4%) children with cerebral palsy had died, seven
children had been incorrectly diagnosed as having cerebral palsy, thirteen families had moved out of the region
and one family had language problems. Of the remaining 714 families, 120/714 (17%) declined to participate.
Drop-out between SPARCLE1 and SPARCLE2 varied significantly between regions; families were more difficult to trace
and more likely to decline to participate if the parents’ educational qualifications, as recorded in SPARCLE1, were
lower; they were also more likely to decline to participate if SPARCLE1 recorded that they were more stressed or if
they had not completed a SPARCLE1 stress questionnaire.
Conclusions: To reduce the risk of bias, all SPARCLE2 analyses should allow for factors (region and walking ability)
which determined the sampling strategy, either by adjusting for these factors or by using sampling weights. Further
analyses should be performed, adjusting for additional factors that were associated with non-response: parents'
educational qualifications, family structure and parental stress. To allow for differential non-response in studies which
sample from population registers, such registers should routinely record socio-demographic information.
Original languageEnglish
Article number300
Number of pages12
JournalBMC Research Notes
Volume5
DOIs
Publication statusPublished - 15 Jun 2012

ASJC Scopus subject areas

  • General Medicine
  • General Biochemistry,Genetics and Molecular Biology

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