title: Profile of daily life in children with brain tumors: an assessment of health-related quality of life.
abstract: OBJECTIVE
  The survival of children with CNS tumors approaches 70%, yet health-related quality of life (HRQOL) has not been investigated rigorously in this population. We aimed to show that universal assessment of HRQOL could be obtained easily by using the PedsQL 4.0 and to provide a composite profile of their daily lives.
  
  
  METHODS
  The PedsQL was administered to all patients seen in the neuro-oncology clinic at Lucile Packard Children's Hospital (Palo Alto, CA) from December 2001, to September 2002. Patients were compared with healthy controls by using two-sided t tests to evaluate statistically significant differences.
  
  
  RESULTS
  One hundred thirty-four patients (73 male; mean age +/- standard deviation, 11.8 +/- 5.4 years; 55 had low-grade glioma, 32 had medulloblastoma/primitive neuroectodermal tumor/embryonal tumor, 17 had malignant astrocytoma, nine had germ-cell tumor, and 21 had other types of tumors) were assessed, each in less than 20 minutes. Scores on both child and parent-proxy reports for the total HRQOL, psychosocial, physical, emotional, social, and school-functioning scales were all significantly lower than controls (P < .01). Patients with low-grade glioma were reported to have the highest total HRQOL. Children receiving radiation therapy (XRT) but no chemotherapy had significantly lower total, psychosocial, emotional, and social functioning than those receiving other treatments, including XRT plus chemotherapy.
  
  
  CONCLUSIONS
  The PedsQL can be used to assess HRQOL rapidly and easily in children with CNS tumors, who have significantly worse HRQOL than healthy children. Children receiving XRT fare worse overall; chemotherapy added to XRT does not seem to worsen HRQOL. Assessment of HRQOL should be included as an outcome in future clinical trials.
authors.affiliation: Department of Neurology, Stanford University School of Medicine, Palo Alto, CA, USA.
authors.forename: Sundeep R
authors.initials: SR
authors.lastname: Bhat
authors.forename: Tress L
authors.initials: TL
authors.lastname: Goodwin
authors.forename: Tasha M
authors.initials: TM
authors.lastname: Burwinkle
authors.forename: Meagan F
authors.initials: MF
authors.lastname: Lansdale
authors.forename: Gary V
authors.initials: GV
authors.lastname: Dahl
authors.forename: Stephen L
authors.initials: SL
authors.lastname: Huhn
authors.forename: Iris C
authors.initials: IC
authors.lastname: Gibbs
authors.forename: Sarah S
authors.initials: SS
authors.lastname: Donaldson
authors.forename: Ruth K
authors.initials: RK
authors.lastname: Rosenblum
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
authors.forename: Paul G
authors.initials: PG
authors.lastname: Fisher
mesh_terms: D000293:Adolescent; D000704:Analysis of Variance; D001932:Brain Neoplasms / Q000503:physiopathology* / Q000523:psychology* / Q000628:therapy; D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D008297:Male; D011788:Quality of Life; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires