Patient perceptions about their treatment for muscle-invasive bladder cancer (MIBC) over the last decade.

765 Background: The Bladder Cancer Advocacy Network (BCAN) is a national patient advocacy organization that has promoted awareness about the signs, symptoms, diagnosis, treatment and need for a multidisciplinary approach to the care of patients with MIBC. To better understand the impact of these efforts, and patients’ perceptions of their care, we surveyed bladder cancer patients initially in 2013 and again in 2023 through the BCAN website. Methods: We developed a 32-question survey with input from physicians, nurses, patients and caregivers. The survey was posted on the BCAN website 06/13-10/14 (Cohort A) and again from 06/23-04/24 (Cohort B). Questions focused on time from initial symptoms to diagnosis and treatment; proportion seeing a medical oncologist (MO) or radiation oncologist (RO); and treatments offered/received. Results: Overall, 337 (243 and 94) patients completed the survey. Respondents were self-selected and most were from the US/Canada, male, white, and had at least an undergraduate education. Median age was 61 (cohort A; range 31-93) and 63 (cohort B; range 38-87), respectively, at the time of diagnosis. The most common presenting symptom was hematuria (88% vs 78%, p=0.05). Overall, 35% vs 30% (p=0.56) waited > 3 months to seek medical attention; in 38% and 43% it took > 3 months to obtain a pathologic diagnosis (p=0.76). Men were more likely than women to be diagnosed within 1-2 months of seeking medical attention: Cohort A (68% vs 47% p=0.03) and Cohort B (70% vs 37%, p=0.03). In both cohorts, prior to surgery, approximately 50% saw a medical oncologist and were offered neoadjuvant chemotherapy; however, less than 10% saw a radiation oncologist and were offered bladder sparing approaches. Most patients reported having all the necessary information, knowing the right questions to ask, and were satisfied with their choices. A higher proportion in Cohort A vs Cohort B felt they had enough time to make their decisions (77% vs 67%, p=0.004). Conclusions: Despite nearly two decades of advocacy, there are ongoing areas of unmet need in MIBC. These include 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.