Disease-specific (e.g. urinary) and generic problems (e.g. fatigue) impact health-related quality of life (HRQOL) of patients with bladder cancer (BC). A questionnaire addressing both sets of problems and generating utilities, a measure of overall HRQOL, is needed for this population.
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. Patients and experts identified urinary problems, bowel problems, sexual problems, body image, pain, and decreased vigor as domains, which impact daily activities and impair HRQOL. Support from patients’ family and friends and their medical team were also paramount to HRQOL.
The Bladder Utility Symptom Scale is a comprehensible instrument that was created to facilitate patient-oriented care and guide clinical policy by grounding guidelines, health resource allocation, and policy decisions in the expressed preferences of BC patients.MAS
