Varni James W, Burwinkle Tasha M, Sherman Sandra A, Hanna Kanela, Berrin Susan J, Malcarne Vanessa L, Chambers Henry G
Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, 3137 TAMU, College Station, Texas 77843-3137, USA.
Dev Med Child Neurol. 2005 Sep;47(9):592-7.
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.
该研究的目的是确定患有脑瘫（CP；偏瘫占24.3%，双瘫占30.4%，四肢瘫占38.5%）的儿科患者是否能够通过儿童生活质量量表第4.0版（PedsQL 4.0）通用核心量表自我报告其健康相关生活质量（HRQOL）。PedsQL被施用于从一家儿童医院诊所和州立医学治疗诊所招募的148个家庭（84名男性，64名女性；平均年龄10岁，标准差3岁9个月，范围5至18岁）。69名儿童（47%）能够自我报告。患有CP的儿童自我报告的HRQOL（平均65.9）显著低于健康儿童（平均83.8）。患有CP的儿童自我报告的HRQOL与正在接受治疗的儿科癌症患者相似（平均68.9）。被诊断为四肢瘫的儿童（平均49.4）自我报告的HRQOL受损程度高于双瘫儿童（平均69.1）和偏瘫儿童（平均72.4）。亲子一致性在情感功能方面最低。医护人员和家长应尽可能了解儿童对HRQOL的看法。
