Purpose: In bladder cancer (BC), 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 treatment guidelines. Thus, a measure is required that can adequately capture patient preference-based health-related quality of life (HRQOL). Both disease-specific (e.g. urinary, sexual, bowel) and generic problems (e.g. fatigue, pain, psychological problems) affect HRQOL in BC. A valid measure needs to address both types of problems. Such a measure would facilitate patient-oriented care by providing physicians with quantitative information of patients' experiences.
Methods: In consultation with 47 BC patients and 12 BC experts we created a novel HRQOL questionnaire for BC in a stepwise, iterative fashion with conceptual framework development, item generation, item reduction, question design and pilot testing. Purposive sampling was used to accrue patients with varying age, gender, disease severity and treatment history so that items important to all BC patients would be generated. The clinically oriented "impact method" was used for item reduction. The questionnaire was pilot tested for face and content validity with 5 BC experts and 40 BC patients using cognitive interviewing and paraphrasing techniques.
Results: Patients and experts identified various BC-specific and generic domains important to their HRQOL (Fig 1). A questionnaire with 10 multiple-choice questions and one visual analogue scale was created that addresses the most important items as rated and approved by BC patients and experts. Questions were linked to functional status when possible.
Conclusions: The Bladder Utility Symptom Scale multiattribute health state classification system is a comprehensible instrument designed to measure global HRQOL for BC patients. Following field testing, weights will be generated for conversion to a utility instrument.
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