"…I Wish Someone Told Me About That…": A Qualitative Assessment of the Educational Needs of Patients Undergoing Cystectomy.

Objective: To utilize patient feedback to identify areas of need for information and ways to improve delivery of education, due to recognition that cystectomy and urinary diversion is a complex operation often overwhelming patients and caregivers.

Methods: We conducted 5 focus groups of bladder cancer patients (separated by gender and diversion type) treated with cystectomy and urinary diversion (n = 17). Questions focused on areas of improvement for patient education. Transcripts were analyzed using the Sort and Sift, Think and Shift method, with insights directing the creation of a flexible codebook. A team of researchers created thematic summaries from individual codes and performed higher level analyses to characterize salient findings.

Results: Patients described ways to improve the content, timing, and format of education. Most patients expressed a desire to receive a list of common patient experiences pre-operatively. Information they wish they had known beforehand included nuances of new urinary routines, sexual dysfunction, complications such as abdominal adhesions or hernias, and details regarding discharge criteria. Patients had differing opinions on what amount of information should be offered before surgery, but most agreed that options for more details available later were ideal. Preferences on formatting of information varied. Overall, an assortment of formats could allow patients to tailor their process to different learning preferences and individual situations.

Conclusion: Patients highlighted key areas for improvement in the breadth, timing, and format of perioperative education. Continued involvement of patients while developing these educational interventions will be pivotal for meeting patient needs and improving outcomes.