title: Measuring priority symptoms in advanced bladder cancer: development and initial validation of a brief symptom index.
abstract: BACKGROUND
  Improved measurement of clinically meaningful symptoms is needed in advanced bladder cancer.
  
  
  OBJECTIVE
  This study developed and examined the initial reliability and validity of a new measure of advanced bladder cancer-specific symptoms, the NCCN-FACT Bladder Symptom Index-18 (NFBISI-18), which assesses the symptoms perceived as most important by patients and oncology clinical experts.
  
  
  METHODS
  A total of 31 individuals with advanced bladder cancer rated the importance of 28 symptoms. In addition, 10 oncology clinical experts rated symptoms as treatment- or disease-related. Patient-rated symptoms were reconciled with published clinicians' symptom priorities, producing the NFBISI-18. Participants completed measures of quality of life (QOL) and performance status to examine initial validity.
  
  
  RESULTS
  An 18-item symptom index for advanced bladder cancer included 3 subscales: disease-related symptoms, treatment side effects, and general function/well-being. Lower scores indicate greater symptom burden. Preliminary reliability reveals good internal consistency for the full NFBISI-18 (alpha = 0.83). The NFBISI-18 was significantly associated with QOL criteria and performance status, in the expected direction.
  
  
  CONCLUSIONS
  Limitations include the cross-sectional design and the relatively low reliability of the disease-related symptoms subscale.
  
  
  CONCLUSIONS
  The NFBISI-18 demonstrates preliminary evidence as a valid brief measure of the most important symptoms of advanced bladder cancer, as rated by both patients and oncology clinical experts. The NFBISI-18 should have greater acceptability to regulatory authorities than previously developed questionnaires.
authors.affiliation: Department of Medical Social Sciences, Northwestern University, Feinberg School of Medicine, 710 N. Lake Shore Drive, Suite 729, Chicago, IL 60611, USA. sally-jensen@northwestern.edu
authors.forename: Sally E
authors.initials: SE
authors.lastname: Jensen
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: Beaumont
authors.forename: Paul B
authors.initials: PB
authors.lastname: Jacobsen
authors.forename: Amy
authors.initials: A
authors.lastname: Abernethy
authors.forename: Karen L
authors.initials: KL
authors.lastname: Syrjala
authors.forename: David
authors.initials: D
authors.lastname: Cella
mesh_terms: D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D001749:Urinary Bladder Neoplasms / Q000175:diagnosis* / Q000523:psychology