Background: Each stage of bladder cancer involves varying treatment issues and concerns that are discussed between patients and providers during the pre-treatment consultation. There is no documentation of how patients engage in decision making. Objective: To describe aspects of treatment decision making perceived by patients with bladder cancer using qualitative analysis of data from individual interviews. Methods: Patients with any stage bladder cancer were recruited from urology and medical oncology services at a comprehensive cancer center. A qualitative approach to data collection and analysis was applied. Individual, semi-structured interviews were conducted, recorded and transcribed. Coding of the transcripts was conducted by research team members, discussed for consensus and major themes derived. Results: 45 men and 15 women, the majority college educated, were recruited. Where to receive care, including from whom, was the initial and major decision. Challenges of decisions regarding urinary reconstruction were dominant. Personal characteristics, including age and being active, were considered. Participants with early stage tumors (n = 28) typically perceived only one treatment option and followed the physician's recommendation. The 18 participants with stage II-III were aware of multiple options. In 14 stage IV participants, balancing quality of life and outcomes between treatments was common to the decision process. Conclusions: For this educated sample with bladder cancer, recruited at a comprehensive cancer center, the major decision was to seek treatment at a location with the highest level of physician expertise. Personal preferences informed decisions surrounding bladder reconstruction. Further research will be conducted in a diverse sample of patients making decisions in a non-urban, community setting.
Keywords: Bladder cancer; qualitative evaluation; shared decision making.