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Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children

Published online by Cambridge University Press:  15 August 2005

James W Varni ,
Tasha M Burwinkle ,
Sandra A Sherman ,
Kanela Hanna ,
Susan J Berrin ,
Vanessa L Malcarne  and
Henry G Chambers
James W Varni
Affiliation:
Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, Texas, USA.
Tasha M Burwinkle
Affiliation:
Department of Anesthesiology, University of Washington, Seattle, Washington, USA.
Sandra A Sherman
Affiliation:
SDSU/UCSD Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, USA.
Kanela Hanna
Affiliation:
UCLA Master of Social Welfare Program, University of California Los Angeles, Los Angeles, USA.
Susan J Berrin
Affiliation:
SDSU Master of Arts Program in Psychology, San Diego State University, San Diego, USA.
Vanessa L Malcarne
Affiliation:
Department of Psychology, San Diego State University, San Diego, USA.
Henry G Chambers
Affiliation:
Motion Analysis Laboratory, Children's Hospital and Health Center, Department of Orthopedics, School of Medicine, University of California San Diego, San Diego, California, USA.
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Abstract

The aim of the study was to determine whether pediatric patients with cerebral palsy (CP; 24.3% hemiplegic, 30.4% diplegic, 38.5% quadriplegic) can self-report their health-related quality of life (HRQOL) with the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) Generic Core Scales. The PedsQL was administered to 148 families (84 males, 64 females; mean 10y, SD 3y 9mo, range 5 to 18y) recruited from a children's hospital clinic and state medical therapy clinics. Sixty-nine children (47%) were able to self-report. Children with CP self-reported a significantly lower HRQOL (mean 65.9) than healthy children (mean 83.8). Children with CP self-reported a similar HRQOL to pediatric cancer patients receiving treatment (mean 68.9). Children diagnosed with quadriplegia (mean 49.4) self-reported more impaired HRQOL than children with diplegia (mean 69.1) and hemiplegia (mean 72.4). Parent–child concordance was lowest for emotional functioning. Providers and parents should obtain the children's HRQOL perceptions whenever possible.

Type
Original Articles
Information
Developmental Medicine and Child Neurology , Volume 47 , Issue 9 , September 2005 , pp. 592 - 597
Copyright
© 2005 Mac Keith Press

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