Literature Review: Health-related Quality of Life Measurement in Pediatric Oncology: Hearing the Voices of the Children Academic Article uri icon


  • 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 PedsQL available at (, 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.

author list (cited authors)

  • Varni, J. W., Limbers, C., & Burwinkle, T. M.

citation count

  • 127

complete list of authors

  • Varni, James W||Limbers, Christine||Burwinkle, Tasha M

publication date

  • April 2007