Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children.
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Dev Med Child Neurol 47 (9): 592--597 (September 2005)

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.
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