Developing a health-related quality of life instrument for childhood brain tumor survivors

Jin Shei Lai*, David Cella, Tadanori Tomita, Rita K. Bode, Monica Newmark, Stewart Goldman

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

29 Scopus citations

Abstract

Objects: With improved treatment, many childhood brain tumor survivors live through adulthood. A psychometrically sound instrument, which can capture their unique experiences through the lifetime, is needed. This paper documents the development of the Pediatric Functional Assessment of Cancer Therapy-Childhood Brain Tumor Survivor (PedsFACT-BrS) for use with survivors for at least 1 year posttreatment. Methods: The PedsFACT-BrS was developed in two phases. In phase I, items were generated via interviewing 20 survivors, 20 caregivers, and 12 clinicians/teachers. In phase II, Rasch analysis and classical test theory were used to evaluate the responses of 46 survivors and 46 caregivers. Conclusion: The 34-item PedsFACT-BrS covers four domains: physical well-being, emotional well-being and illness experiences, social well-being, and brain tumor-specific concerns. Its scalability is supported by Rasch analysis and its content validity and reliability is documented. It is now ready to be validated to other subpopulations across the disease trajectory.

Original languageEnglish (US)
Pages (from-to)47-57
Number of pages11
JournalChild's Nervous System
Volume23
Issue number1
DOIs
StatePublished - Jan 1 2007

Keywords

  • Braintumor
  • Children
  • Health-related quality of life (HRQL)
  • Late effect
  • Rasch analysis
  • Survivor

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Clinical Neurology

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