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

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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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Acknowledgements

This study was supported by the Coleman Foundation via Robert H. Lurie Comprehensive Cancer Center of Feinberg School of Medicine at Northwestern University.

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Authors and Affiliations

  1. Center on Outcomes, Research and Education (CORE), Evanston Northwestern Healthcare, 1001 University Place, Suite 100, Evanston, IL, 60201, USA

    Jin-Shei Lai & David Cella

  2. Institute for Healthcare Studies, Feinberg School of Medicine, Northwestern University, 1001 University Place, Suite 100, Evanston, IL, 60201, USA

    Jin-Shei Lai & David Cella

  3. Neurosurgery, Children’s Memorial Hospital, Children’s Memorial Outpatient Center, Lincoln Park, 2515 N. Clark Street, Chicago, IL, 60614, USA

    Tadanori Tomita

  4. Neurological Surgery, Feinberg School of Medicine, Northwestern University, Children’s Memorial Outpatient Center, Lincoln Park, 2515 N. Clark Street, Chicago, IL, 60614, USA

    Tadanori Tomita

  5. Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, 345 East Superior Street, Room O-960, Chicago, IL, 60611, USA

    Rita K. Bode

  6. Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, 345 East Superior Street, Room O-960, Chicago, IL, 60611, USA

    Rita K. Bode

  7. Department of Neuro-oncology, Children’s Memorial Hospital, 2300 Children’s Plaza, Lincoln and Fullerton Avenues, Chicago, IL, 60614, USA

    Monica Newmark & Stewart Goldman

  8. Department of Pediatrics, Feinberg School of Medicine, Northwestern University, 2300 Children’s Plaza, Lincoln and Fullerton Avenues, Chicago, IL, 60614, USA

    Stewart Goldman

Authors
  1. Jin-Shei Lai
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  2. David Cella
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  3. Tadanori Tomita
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  4. Rita K. Bode
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  5. Monica Newmark
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  6. Stewart Goldman
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Correspondence to Jin-Shei Lai.

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Lai, JS., Cella, D., Tomita, T. et al. Developing a health-related quality of life instrument for childhood brain tumor survivors. Childs Nerv Syst 23, 47–57 (2007). https://doi.org/10.1007/s00381-006-0176-6

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  • DOI: https://doi.org/10.1007/s00381-006-0176-6

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