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Predictors of drop-out in a multi-centre longitudinal study of participation and quality of life of children with cerebral palsy
Dickinson H., Rapp M., Arnaud C., Carlsson M., Colver A., Fauconnier J., Lyons A., Marcelli M., Michelsen S., Parkes J. et al
BMC Research Notes 5, 1 (2012) 300 - http://www.hal.inserm.fr/inserm-00753541
Predictors of drop-out in a multi-centre longitudinal study of participation and quality of life of children with cerebral palsy
Heather Dickinson () 1, Marion Rapp2, Catherine Arnaud3, Malin Carlsson4, Allan Colver1, Jérôme Fauconnier5, Alan Lyons6, Marco Marcelli7, Susan Michelsen8, Jackie Parkes9, Kathryn Parkinson10
1 :  Institute of Health and Society
Newcastle University
Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP
2 :  Klinik für Kinder und Jugendmedizin
Universitätsklinikum Schleswig-Holstein
Ratzeburger Allee 160, Lübeck, 23538
3 :  Epidémiologie et anlyses en santé publique: risques, maladies chroniques et handicaps
INSERM : U1027 – Université Paul Sabatier (UPS) - Toulouse III
Faculté de médecine Purpan, 37 allée Jules Guesde 31073 Toulouse Cedex 7
4 :  The Queen Silvia Children's Hospital
Göteborg University
Göteborg, S-41685
5 :  SIIM-Pole Exploitation
Université Joseph Fournier – CHU Grenoble
6 :  Lavanagh Centre
Lavanagh Centre
Ballintemple, Cork
7 :  Azienda Sanitaria Locale Viterbo
Azienda Sanitaria Locale Viterbo
Viale Trento 18 H, Viterbo, 01100
8 :  National Institute of Public Health
National Institute of Public Health
Oster Farimagsgade 5, Copenhagen, 1353
9 :  School of Nursing & Midwifery
Queen's University Belfast
21 Stranmillis Road, Belfast, BT9 5AF
10 :  Institute of Health and Society
Newcastle University
William Leech Building, Newcastle upon Tyne, NE2 4HH
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).
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.
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.
Sciences du Vivant/Santé publique et épidémiologie

Articles dans des revues avec comité de lecture
BMC Research Notes (BMC Res Notes)
Publisher BioMed Central
ISSN 1756-0500 

Attrition – Longitudinal study – Cerebral palsy
SPARCLE 1 was funded by the European Commission Research Framework 5 Programme - Grant number QLG5-CT-2002-00636, German Ministry of Health GRR-58640-2/14 and German Foundation for Disabled Child.
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