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

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.