OBJECTIVES: To understand disease-related symptoms experienced by high-risk non-muscle invasive bladder cancer (NMIBC) patients, selected treatment patterns, patient satisfaction with their treatment and concern regarding future potential treatments.
METHODS: Ten interviews were conducted with patients recruited at two urology clinics in the United States; patients were recruited by clinic staff. Patients were eligible to participate if they met one of the following three criteria: 1) were Bacillus Calmette–Guérin (BCG)-naïve treated with transurethral resection of bladder tumor (TURBT) ± intravesical chemotherapy; 2) had current or previous BCG treatment but were refractory or resistant to treatment; or 3) were BCG refractory or relapsing and whose next treatment option would be cystectomy but were prior to cystectomy.
RESULTS: Participants were demographically representative of the patient population that seeks treatment for NMIBC. Nearly all interview participants reported visible hematuria as the symptom which led to their diagnosis. Other disease-specific symptoms were not frequently reported. All participants had received one or more NMIBC drugs (i.e., BCG, mitomycin, valrubicin), a procedure (i.e., TURBT, cystoscopy), or both. All participants reported transient medication side effects (e.g., painful urination, urgency, frequency) and/or catheter or stent adverse events (e.g., painful or burning urination, passing blood clots) following their procedure or surgery. Despite these findings, almost all participants were satisfied with their treatment. All patients were concerned about the possibility of cystectomy, should their disease progress, and were highly motivated to avoid this treatment.
CONCLUSIONS: Patients reported disease and treatment-related symptoms; however, they were not severe enough to impact the patient’s willingness to undergo intravesical therapy or diagnostic procedures. Further research is needed to better characterize the impact of timing and duration of treatment-related symptoms, as well as patient and caregiver perspective on additional bladder cancer therapies, especially when bladder sparing may be warranted.
