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Child's Nervous System
Published in: Child's Nervous System 1/2007

01-01-2007 | Original Paper

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

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

Published in: Child's Nervous System | Issue 1/2007

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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.
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Metadata
Title
Developing a health-related quality of life instrument for childhood brain tumor survivors
Authors
Jin-Shei Lai
David Cella
Tadanori Tomita
Rita K. Bode
Monica Newmark
Stewart Goldman
Publication date
01-01-2007
Publisher
Springer-Verlag
Published in
Child's Nervous System / Issue 1/2007
Print ISSN: 0256-7040
Electronic ISSN: 1433-0350
DOI
https://doi.org/10.1007/s00381-006-0176-6

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