caa a22 4500 463178947 CHVBK 20180406164833.0 cr unu---uuuuu 170326e20070101xx s 000 0 eng 10.1007/s00381-006-0176-6 doi (NATIONALLICENCE)springer-10.1007/s00381-006-0176-6 Developing a health-related quality of life instrument for childhood brain tumor survivors [Elektronische Daten] [Jin-Shei Lai, David Cella, Tadanori Tomita, Rita Bode, Monica Newmark, Stewart Goldman] 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 1year 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. Springer-Verlag, 2006 Health-related quality of life (HRQL) nationallicence Brain tumor nationallicence Survivor nationallicence Children nationallicence Rasch analysis nationallicence Late effect nationallicence Lai Jin-Shei Center on Outcomes, Research and Education (CORE), Evanston Northwestern Healthcare, 1001 University Place, Suite 100, 60201, Evanston, IL, USA aut Cella David Center on Outcomes, Research and Education (CORE), Evanston Northwestern Healthcare, 1001 University Place, Suite 100, 60201, Evanston, IL, USA aut Tomita Tadanori Neurosurgery, Children's Memorial Hospital, Children's Memorial Outpatient Center, Lincoln Park, 2515 N. Clark Street, 60614, Chicago, IL, USA aut Bode Rita Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, 345 East Superior Street, Room O-960, 60611, Chicago, IL, USA aut Newmark Monica Department of Neuro-oncology, Children's Memorial Hospital, 2300 Children's Plaza, Lincoln and Fullerton Avenues, 60614, Chicago, IL, USA aut Goldman Stewart Department of Neuro-oncology, Children's Memorial Hospital, 2300 Children's Plaza, Lincoln and Fullerton Avenues, 60614, Chicago, IL, USA aut Child's Nervous System Springer-Verlag 23/1(2007-01-01), 47-57 0256-7040 23:1<47 2007 23 381 https://doi.org/10.1007/s00381-006-0176-6 text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00381-006-0176-6 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Lai Jin-Shei Center on Outcomes, Research and Education (CORE), Evanston Northwestern Healthcare, 1001 University Place, Suite 100, 60201, Evanston, IL, USA aut NATIONALLICENCE 700 1- Cella David Center on Outcomes, Research and Education (CORE), Evanston Northwestern Healthcare, 1001 University Place, Suite 100, 60201, Evanston, IL, USA aut NATIONALLICENCE 700 1- Tomita Tadanori Neurosurgery, Children's Memorial Hospital, Children's Memorial Outpatient Center, Lincoln Park, 2515 N. Clark Street, 60614, Chicago, IL, USA aut NATIONALLICENCE 700 1- Bode Rita Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, 345 East Superior Street, Room O-960, 60611, Chicago, IL, USA aut NATIONALLICENCE 700 1- Newmark Monica Department of Neuro-oncology, Children's Memorial Hospital, 2300 Children's Plaza, Lincoln and Fullerton Avenues, 60614, Chicago, IL, USA aut NATIONALLICENCE 700 1- Goldman Stewart Department of Neuro-oncology, Children's Memorial Hospital, 2300 Children's Plaza, Lincoln and Fullerton Avenues, 60614, Chicago, IL, USA aut NATIONALLICENCE 773 0- Child's Nervous System Springer-Verlag 23/1(2007-01-01), 47-57 0256-7040 23:1<47 2007 23 381 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer