Opportunities for Improvement
For patients scheduled for this type of surgery, the available evidence should provide “encouragement that they are very likely to return to their previous activities and way of life after recovery from radical cystectomy and urinary diversion,” Dr Bochner stated. “In addition, it’s important for [clinicians] to know these patient-reported outcomes so they can help manage patient expectations and arrange the proper support based on the areas that patients feel are most important to them as individuals.”
In efforts to improve patient-centered care and outcomes after urinary diversion, Dr Gilbert believes the 2 areas with the most profound potential impact are education and preparation prior to surgery, and support and continued education after surgery. In a 2020 study of 192 cystectomy patients, he and colleagues noted that although the type of urinary diversion was not associated with decision regret, there was a negative association between informed decision-making and decision regret and between QOL and decision regret at 18 months following surgery.3
Similarly, a 2021 review found that preoperative counseling regarding the types of urinary diversion available and options to preserve sexual function was linked to increased postsurgical HRQOL in patients undergoing radical cystectomy.4 “Because urinary diversion can be associated with physical and functional changes, many patients understandably have concerns about how that component of surgery will affect their day-to-day life and quality of life,” Dr Gilbert said.
However, the review findings suggest that urologists do not commonly discuss options for sex-preserving techniques with patients, despite recommendations from professional guidelines to offer such techniques to patients with muscle-invasive bladder cancer.4
A qualitative study published in 2021 also underscored the importance of postoperative support in this patient population. Participants indicated the need for more thorough counseling regarding ongoing postsurgical care and discussed the desire for a “buddy system” in which they could connect with experienced patients for advice and peer support regarding self-management after surgery.5
Addressing Remaining Gaps
Along with prioritizing honest conversations and counseling with patients, Dr Gilbert emphasizes the need to increase awareness of and access to existing support resources while developing new ones to optimize care and outcomes. “Although there are amazing resources that many patients can access, such as specialized enterostomal nurse care, local community support groups, and broader bladder cancer patient networks such as the Bladder Cancer Advocacy Network, educational and care resources that are tailored to urinary diversion patients are surprisingly variable and can be sparse,” he noted.
Expanding such support “goes beyond physicians and surgeons and requires substantial contributions from nurses and patient educators who can take on the task and dedicate the time to support these patients, both as they prepare for surgery and during the postoperative recovery phase after surgery,” Dr Gilbert stated.
Regarding ongoing research needs in this area, Dr Bochner would like for more clinicians and patients to become involved in collecting patient-reported QOL data. He and his colleagues also aim to “continue this work in developing better QOL measurement tools and eventually develop a more individualized approach to QOL in bladder cancer patients.”
Dr Gilbert points to the need to adequately address the needs identified in research regarding patient-centered and patient-reported outcomes: “I think that we need to move from evaluation and measurement, which has been the predominant focus of research in this area for the past 10 years, to interventional program development and implementation to address those observed gaps.”
- Clements MB, Atkinson TM, Dalbagni GM, et al. Health-related quality of life for patients undergoing radical cystectomy: results of a large prospective cohort. Eur Urol. 2022;81(3):294-304. doi:10.1016/j.eururo.2021.09.018
- Masiero M, Busacchio D, Guiddi P, et al. Quality of life and psycho-emotional wellbeing in bladder cancer patients and their caregivers: a comparative analysis between urostomy versus ileal orthotopic neobladder. Ecancermedicalscience. 2021;15:1163. doi:10.3332/ecancer.2021.1163
- Check DK, Leo MC, Banegas MP, et al. Decision regret related to urinary diversion choice among patients treated with cystectomy. J Urol. 2020;203(1):159-163. doi:10.1097/JU.0000000000000512
- Nuijens ST, Cobussen-Boekhorst H, Heesakkers JPFA, Witjes JA. Patient-reported outcomes and health-related quality of life after urinary diversions. Curr Opin Urol. 2021;31(6):574-579. doi:10.1097/MOU.0000000000000906
- Klein GT, Ajay D, Volk RJ, Leal V, Westney OL. Living with urinary diversions: patient insights to improve the perioperative experience. Urology. 2021;152:190-194. doi:10.1016/j.urology.2021.01.009