title: Developing a health-related quality of life instrument for childhood brain tumor survivors.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Center on Outcomes, Research and Education, Evanston Northwestern Healthcare, 1001 University Place, Suite 100, Evanston, IL 60201, USA. js-lai@northwestern.edu
authors.forename: Jin-Shei
authors.initials: JS
authors.lastname: Lai
authors.forename: David
authors.initials: D
authors.lastname: Cella
authors.forename: Tadanori
authors.initials: T
authors.lastname: Tomita
authors.forename: Rita K
authors.initials: RK
authors.lastname: Bode
authors.forename: Monica
authors.initials: M
authors.lastname: Newmark
authors.forename: Stewart
authors.initials: S
authors.lastname: Goldman
mesh_terms: D001932:Brain Neoplasms / Q000523:psychology*; D017028:Caregivers; D002648:Child; D005178:Faculty; D005260:Female; D006801:Humans; D008297:Male; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*