Developing a Health-related Quality of Life Instrument for Childhood Brain Tumor Survivors

Overview

Journal Childs Nerv Syst

Specialty Pediatrics

Date 2006 Sep 9

PMID 16960733

Citations 16

Authors

Jin-Shei Lai

David Cella

Tadanori Tomita

Rita K Bode

Monica Newmark

Stewart Goldman

Affiliations

Soon will be listed here.

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.

Citing Articles

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Quality of Life in Brain Cancer: Clinical Validation of the Mexican-Spanish Version of the EORTC QLQ-BN20 Questionnaire.

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Late vertebral side effects in long-term survivors of irradiated childhood brain tumor.

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Employment status and termination among survivors of pediatric brain tumors: a cross-sectional survey.

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Neurocognitive Function and Health-Related Quality of Life in Pediatric Korean Survivors of Medulloblastoma.

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