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

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.

author list (cited authors)

  • Varni, J. W., Burwinkle, T. M., Sherman, S. A., Hanna, K., Berrin, S. J., Malcarne, V. L., & Chambers, H. G.

citation count

  • 81

complete list of authors

  • Varni, James W||Burwinkle, Tasha M||Sherman, Sandra A||Hanna, Kanela||Berrin, Susan J||Malcarne, Vanessa L||Chambers, Henry G

publication date

  • September 2005

publisher