Recovery after cystectomy and urinary diversion: patient experiences and challenges

Radical cystectomy with urinary diversion is the standard treatment for muscle-invasive bladder cancer, yet patients often face substantial recovery challenges post-surgery. Previous research has identified common issues; however, the prevalence and predictors of these challenges remain underexplored. This study was aimed at assessing the frequency and nature of post-operative challenges experienced by bladder cancer patients and at identifying clinical and demographic factors associated with higher unmet needs.

Participants from three Kaiser Permanente regions who underwent cystectomy with either ileal conduit or neobladder diversion between 2013 and 2015 completed surveys at 6 and 18 months post-surgery. Items were derived from prior qualitative research and clinician input. Multivariable linear and negative binomial regressions were used to examine associations between surgery type and patient characteristics and challenges.

Among 269 respondents at 6 months and 201 at 18 months, 80% and 68% reported at least one challenge, respectively. Common issues included accidents/leaks, sleep disturbances, and managing necessary urinary diversion supplies. Patients with ileal conduits reported more body habitus-related challenges, which increased over time. At 18 months, younger age, male sex, and advanced AJCC stage were associated with a higher number of challenges. Surgery type and complications were not significantly associated with challenge burden.

Recovery from cystectomy and urinary diversion is marked by persistent challenges which vary by diversion type and patient characteristics. These findings highlight the extent to which challenges continue over time, and may help inform the development and future evaluation of tailored supportive interventions for bladder cancer survivors.