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

Waters, Elizabeth Dphil
Davis, Elise PhD
Mackinnon, Andrew PhD
Boyd, Roslyn MSc (PT) PhD
Graham, H Kerr MD FRCS (Ed) FRACS
Lo, Sing Kai PhD
Wolfe, Rory PhD
Stevenson, Richard MD
Bjornson, Kristie PhC PT PCS
Blair, Eve PhD
Hoare, Peter BM Bch FRCPsych
Ravens-Sieberer, Ulrike PhD
Reddihough, Dinah MD BSc FRACP FAFRM

Elizabeth Waters^* DPhil; Elise Davis PhD, Deakin University, Melbourne
Andrew Mackinnon PhD, Australian National University, Canberra
Roslyn Boyd MSc (PT) PhD, Murdoch Childrens Research Institute
H Kerr Graham MD FRCS (Ed) FRACS, University of Melbourne
Sing Kai Lo PhD, Deakin University
Rory Wolfe PhD, Monash University, Melbourne, Australia.
Richard Stevenson MD, University of Virginia, Charlottesville, Virginia
Kristie Bjornson PhC PT PCS, Children's Hospital and Regional Medical Center, Seattle, USA.
Eve Blair PhD, University of Western Australia, West Perth, Western Australia.
Peter Hoare BM Bch FRCPsych, Royal Hospital for Sick Children, Edinburgh, UK.
Ulrike Ravens-Sieberer PhD, Robert Koch Institute, Berlin, Germany.
Dinah Reddihough MD BSc FRACP FAFRM, Royal Children's Hospital, Melbourne, Australia.

^*Correspondence to the first author at School of Health and Social Development, Deakin University, 221 Burwood Highway, Melbourne, Victoria 3125, Australia. E-mail: [email protected]

Acknowledgements The authors wish to acknowledge the contribution of Sue Reid and Anna Lanigan from the VCPR. The study was funded by National Health and Medical Research Grant (NHMRC 284514), Murdoch Childrens Research Institute, Victorian Health Promotion Foundation and the Telstra Foundation. Dr Boyd is supported by an NHMRC Postdoctoral Hospital training fellowship.

List of abbreviations CHQ Child Health Questionnaire; CP QOL-Child Quality of life instrument for children with cerebral palsy; ICF International Classification of Function; PedsQL Pediatric QOL Questionnaire; VCPR Victorian Cerebral Palsy Register

Accepted for publication 21st June 2006.

Developmental Medicine & Child Neurology 49(1):p 49-55, January 2007.

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/cerebral-palsy/cp_qol_home.php