Understanding patient perspectives in the management of their muscle-invasive bladder cancer

Objectives To evaluate the impact of advocacy efforts by organisations such as the Bladder Cancer Advocacy Network (BCAN) to increase awareness about the signs, symptoms, diagnosis, treatment and need for a multidisciplinary approach to the care of patients with muscle-invasive bladder cancer (MIBC). Materials and Methods We developed a 32-question survey with input from physicians, nurses, patients and caregivers. The survey was posted on the BCAN website between August 2013 and September 2014 (Cohort A) and again between June 2023 and April 2024 (Cohort B). Questions focused on time from initial symptoms to diagnosis and treatment, proportion seeing a medical oncologist or radiation oncologist, treatments offered/received, and patient satisfaction with their treatment choices. Results Overall, 337 self-selected patients mostly white males from the US or Canada, with at least an undergraduate education completed the survey. There were 243 patients in Cohort A and 94 patients in Cohort B. The median age (range) at diagnosis was 61 (31-93) in Cohort A and 63 (38-87) in Cohort B. The most common presenting symptom was hematuria. In Cohorts A and B, 35% vs 30% (P = 0.56) waited >3 months to seek medical attention, and in 38% vs 43% (P = 0.76) it took >3 months to obtain a diagnosis. Men were more likely than women to be diagnosed within 1-2 months in both cohorts (Cohort A: 68% vs 47%; P = 0.03, Cohort B: 70% vs 37%; P = 0.03). Preoperative consultation with a radiation oncologist and bladder-sparing use were infrequent. More patients in Cohort A (77%) felt they had enough time to make decisions compared to Cohort B (67%) (P = 0.004). Most patients were satisfied with their treatment choices. Conclusions There are ongoing areas of unmet need in MIBC, including reducing time to definitive diagnosis and treatment, especially in women, and increasing multidisciplinary assessments prior to definitive surgery. Respondents were self-selected, had access to the BCAN website, and were highly educated, potentially limiting the generalizability of these results.