title: Literature review: health-related quality of life measurement in pediatric oncology: hearing the voices of the children.
abstract: The objective of this literature review is to provide an overview of the evidence for pediatric patient self-report in pediatric oncology. Methods A review of the general literature on pediatric health-related quality of life (HRQOL) measurement as background, with pediatric patient self-report data from the Journal of Pediatric Psychology during the past 5 years in pediatric oncology summarized. Utilizing the PedsQL available at (http://www.pedsql.org), data are presented to illustrate child and parent reports in pediatric oncology. Results Data demonstrate that children as young as 5 years of age can reliably and validly self-report their HRQOL when an age-appropriate instrument is utilized. Conclusions The evidence supports including pediatric patients' perspectives in clinical trials. Parent proxy-report is recommended when pediatric patients are too young, too cognitively impaired, too ill or fatigued to complete a HRQOL instrument, but not as a substitute for child self-report when the child is willing and able to provide their perspective.
authors.affiliation: College of Architecture, Texas A&M University, 3137 TAMU, College Station, TX 77843-3137 USA. jvarni@archmail.tamu.edu
authors.forename: James W
authors.initials: JW
authors.lastname: Varni
authors.forename: Christine
authors.initials: C
authors.lastname: Limbers
authors.forename: Tasha M
authors.initials: TM
authors.lastname: Burwinkle
mesh_terms: D001294:Attitude to Health; D002648:Child; D006304:Health Status; D006801:Humans; D009369:Neoplasms / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*