e16605 Background: Radical cystectomy (RC) is the recommended treatment for Bacillus Calmette-Guérin-unresponsive high-risk non-muscle invasive bladder cancer (HR-NMIBC) and muscle invasive bladder cancer (MIBC). This survey explored the patient RC decision-making process, level of regret, and current impact of RC on their life. Methods: Adults with HR-NMIBC/MIBC who underwent RC (≥6 months ago) from France, Germany, Italy, Japan, the United States, Brazil, and Mexico participated in an online survey. The survey included the Decision Regret Scale (DRS) and questions on patient decision-making before RC, regret after RC, and the current impact of RC on their daily life. Quantitative data were analyzed descriptively; qualitative data were analyzed thematically. Results: Patients (n = 222) were a mean age of 50 years, 70% male, a mean of 2.3 years after RC, and 23% had metastatic disease at time of data collection. Patients reported collaborative and supportive relationships with healthcare providers (HCPs) and 84% felt “very” or “somewhat” satisfied with information provided for decision-making. Before RC, 93% of patients reported being informed of alternative treatments, though 35% and 55% reported not receiving information on systemic chemotherapy or radiation, respectively. Following RC, 90% of patients experienced some level of regret; with 36% reporting moderate/severe regret. The most common reasons for regret were impact on physical/mental health, quality of life, and issues with urinary diversion. Most patients (93%) reported bothersome current symptoms or functional impacts; > 50% patients reported impact on their sex drive and pleasure, energy level, body image, sleep quality, mental health, ability to travel and do day-to-day activities, and their financial situation. Patients with moderate/severe regret reported significantly more impact to their daily life than patients with mild regret. After a mean of 2.3 years post RC, 41% of patients have not returned to their usual activities and 48% have not returned to their usual health before diagnosis. Most patients (95%) relied on caregivers for support. Conclusions: Patients undergoing RC felt well-informed and made shared decisions with their HCP. However, most (90%) patients experienced some level of decision regret, mainly due to the physical or psychological impacts of RC. Patients still experience substantial impact to their daily life and rely on caregivers for support, at a mean of 2.3 years after RC. These results highlight the need to better understand the patient experience of RC beyond typical assessment methods and to balance decision-making with newer bladder-preserving treatment options.
Filicevas et al. (Thu,) studied this question.