Abstract

You have accessJournal of UrologyGeneral & Epidemiological Trends & Socioeconomics: Quality of Life1 Apr 2014MP15-01 DEVELOPING THE BLADDER UTILITY SYMPTOM SCALE: A MULTIATTRIBUTE HEALTH STATE CLASSIFICATION FOR BLADDER CANCER Nathan Perlis, Murray Krahn, Shabbir Alibhai, Antonio Finelli, Paul Ritvo, Karen Bremner, Kirstin Boehme, and Girish Kulkarni Nathan PerlisNathan Perlis More articles by this author , Murray KrahnMurray Krahn More articles by this author , Shabbir AlibhaiShabbir Alibhai More articles by this author , Antonio FinelliAntonio Finelli More articles by this author , Paul RitvoPaul Ritvo More articles by this author , Karen BremnerKaren Bremner More articles by this author , Kirstin BoehmeKirstin Boehme More articles by this author , and Girish KulkarniGirish Kulkarni More articles by this author View All Author Informationhttps://doi.org/10.1016/j.juro.2014.02.554AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookTwitterLinked InEmail INTRODUCTION AND OBJECTIVES In bladder cancer (BCa), treatment-related decision making is heavily preference-based. This is particularly important given multiple treatment options for several stages of the disease and the lack of randomized controlled trials to inform guidelines. Thus, a measure is required that adequately captures patient preference-based health-related quality of life (HRQOL). Such an instrument would facilitate patient-oriented care by providing physicians with quantitative information of patients’ experiences. METHODS We created a novel HRQOL questionnaire for BCa (the Bladder Utility Symptom Scale (BUSS) in a stepwise, iterative fashion with conceptual framework development, item generation, item reduction, question design and pilot testing. A systematic literature search in Medline, Embase, CINAHL and PsychInfo up to January 2013 was performed to generate initial items on the HRQOL effects of BCa and its treatments. Thematic synthesis was used to group related items into overarching themes (domains) and create a provisional conceptual framework. Purposive sampling was used to accrue patients of different ages, genders, disease severities and treatment histories to generate items important to all BCa patients. The clinically oriented “impact method” was used for item reduction. The questionnaire was pilot tested for face and content validity. RESULTS After a comprehensive literature review of 1275 citations, 170 full text articles were identified from which 169 unique items relevant to BCa patients were abstracted by two reviewers. In consultation with 47 BCa patients and 12 BCa experts various BCa-specific and generic domains and items important to their HRQOL were confirmed. A questionnaire with 10 multiple-choice questions and one visual analogue scale was created to address the most important items as rated and approved by BCa patients and experts. Twenty iterations of the BUSS were generated through pilot testing and interviews with 5 BCa experts and 40 BCa patients. The final BUSS questionnaire included 5 BCa-specific domains (storage urinary problems, urine leakage, sexual problems, bowel problems and impaired body image) and 5 generic domains (pain, vigor, impaired social relationships, impaired medical relationships and psychological problems). CONCLUSIONS The BUSS multiattribute health state classification system is a comprehensible instrument designed to measure global HRQOL for BCa patients. The next steps in its development are field testing, followed by generation of weights to calculate BUSS utility scores. © 2014FiguresReferencesRelatedDetails Volume 191Issue 4SApril 2014Page: e144 Advertisement Copyright & Permissions© 2014MetricsAuthor Information Nathan Perlis More articles by this author Murray Krahn More articles by this author Shabbir Alibhai More articles by this author Antonio Finelli More articles by this author Paul Ritvo More articles by this author Karen Bremner More articles by this author Kirstin Boehme More articles by this author Girish Kulkarni More articles by this author Expand All Advertisement Advertisement PDF downloadLoading ...

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