title: 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.
authors.affiliation: Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, 3137 TAMU, College Station, Texas 77843-3137, USA. jvarni@archone.tamu.edu
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
authors.forename: Tasha M
authors.initials: TM
authors.lastname: Burwinkle
authors.forename: Sandra A
authors.initials: SA
authors.lastname: Sherman
authors.forename: Kanela
authors.initials: K
authors.lastname: Hanna
authors.forename: Susan J
authors.initials: SJ
authors.lastname: Berrin
authors.forename: Vanessa L
authors.initials: VL
authors.lastname: Malcarne
authors.forename: Henry G
authors.initials: HG
authors.lastname: Chambers
mesh_terms: D000293:Adolescent; D000328:Adult; D002547:Cerebral Palsy / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology; D010552:Personality Assessment / Q000706:statistics & numerical data; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D012803:Sick Role; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires