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 (NFBlSI-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 NFBlSI-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 NFBlSI-18 (α = 0.83). The NFBlSI-18 was significantly associated with QOL criteria and performance status, in the expected direction.

LIMITATIONS: Limitations include the cross-sectional design and the relatively low reliability of the disease-related symptoms subscale.

CONCLUSION: The NFBlSI-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 NFBlSI-18 should have greater acceptability to regulatory authorities than previously developed questionnaires.

Written by:
Jensen SE, Beaumont JL, Jacobsen PB, Abernethy A, Syrjala KL, Cella D.   Are you the author?
Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, Illinois; Department of Surgery-Division of Organ Transplantation, Feinberg School of Medicine, Chicago, Illinois.

Reference: J Support Oncol. 2012 Oct 20. pii: S1544-6794(12)00142-5.
doi: 10.1016/j.suponc.2012.07.002


PubMed Abstract
PMID: 23089235

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