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

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.