• Sally E Jensen, Jennifer L Beaumont, Paul B Jacobsen, Amy Abernethy, Karen L Syrjala, and David Cella.
• 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
• J Support Oncol. 2013 Jun 1;11(2):86-93.

BackgroundImproved measurement of clinically meaningful symptoms is needed in advanced bladder cancer.ObjectiveThis 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.MethodsA 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.ResultsAn 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.LimitationsLimitations include the cross-sectional design and the relatively low reliability of the disease-related symptoms subscale.ConclusionThe 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.

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