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Journal of Pediatric Psychology Advance Access published online on March 8, 2007
Journal of Pediatric Psychology, doi:10.1093/jpepsy/jsm008
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© The Author 2007. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org

Literature Review: Health-Related Quality of Life Measurement in Pediatric Oncology: Hearing the Voices of the Children

James W Varni, PhD1, Christine Limbers, MS2 and Tasha M Burwinkle, PhD3

1Department of Pediatrics, College of Medicine, Department of Landscape Architecture and Urban Planning, College of Architecture and 2Department of Psychology, Texas A&M University, College Station and 3The Children's Hospital at Scott and White, Department of Pediatrics, College of Medicine, Texas A&M University Health Sciences Center

All correspondence concerning this article should be addressed to James W. Varni, PhD, Professor of Architecture and Medicine, College of Architecture, Texas A&M University, 3137 TAMU, College Station, Texas, 77843-3137 USA. E-mail: jvarni{at}archmail.tamu.edu.


  Abstract

Objectives 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 PedsQLTM (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.

Key words: children; health-related quality of life; patient-reported outcomes; pediatric oncology; PedsQL.

Received August 31, 2006; revision received January 17, 2007; accepted January 26, 2007


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