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J Pediatr Psychol. 2007 Oct;32(9):1151-63. Epub 2007 Mar 8.

Literature review: health-related quality of life measurement in pediatric oncology: hearing the voices of the children.

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1
College of Architecture, Texas A&M University, 3137 TAMU, College Station, TX 77843-3137 USA. jvarni@archmail.tamu.edu

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.

PMID:
17347186
DOI:
10.1093/jpepsy/jsm008
[Indexed for MEDLINE]

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