Living With Urinary Diversions: Patient Insights to Improve the Perioperative Experience

Published:January 18, 2021DOI:



      To evaluate the perioperative decision-making process, post-operative decision regret and reflection on the peri-operative experience of patients undergoing radical cystectomy and urinary diversion through patient interviews.


      Patients identified as having undergone radical cystectomy for malignancy were interviewed 6-24 months from the time of surgery and stratified by diversion type. Following written consent, interviews were conducted either in person or over the phone using a semi-structured script. Patients were asked 9 open-ended questions, with additional unscripted follow-up questions based on themes raised by the patient. The interviews were reviewed for common themes, preferences, and recommendations.


      A total of 13 interviews were conducted. No patient expressed decision regret about their choice of urinary diversion. Ten out of 13 interviewees specifically stated that they had adequate information about diversion options pre-operatively, none felt they did not have adequate pre-operative counseling. One area identified as improvable was postoperative counseling- specifically, for ostomy appliances, catheters, or irrigation. The most striking recurrent theme was the desire for a “buddy system” in which patients could contact and maintain discussion about their surgical experience with an experienced patient. The overall impression was that this system would be most useful in the recovery/maintenance phase rather than in the pre-operative decision-making process.


      This data furnishes a basis to develop more accessible and effective counseling and highlights the need to concentrate on post-surgical maintenance care, including management of urostomy appliances, catheters, and reinforcing irrigation technique.


      IC (Ileal conduit), UD (urinary diversion), NB (neobladder), IP (Indiana pouch), BCAN (Bladder Cancer Advocacy Network)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Urology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Spiess PE
        • Agarwal N
        • Bangs R
        • et al.
        Bladder cancer, version 5.2017, NCCN clinical practice guidelines in oncology.
        J Natl Compr Canc Netw. 2017; 15: 1240-1267
      1. American Cancer Association. Key Statistics for Bladder Cancer. 2020, January 8.

        • Antoni S
        • Ferlay J
        • Soerjomataram I
        • Znaor A
        • Jemal A
        • Bray F.
        Bladder cancer incidence and mortality: a global overview and recent trends.
        Eur Urol. 2017; 71: 96-108
        • Check DK
        • Leo MC
        • Banegas MP
        • et al.
        Decision regret related to urinary diversion choice among patients treated with cystectomy.
        J Urol. 2020; 203: 159-163
        • Berry DL
        • Wang Q
        • Halpenny B
        • Hong F.
        Decision preparation, satisfaction and regret in a multi-center sample of men with newly diagnosed localized prostate cancer.
        Patient Educ Couns. 2012; 88: 262-267
        • Leo MC
        • Gilbert SM
        • Wendel CS
        • et al.
        Development of a goal elicitation measure to support choice about urinary diversion by patients with bladder cancer.
        J Urol. 2019; 202: 83-89