UCSF

Abstract: Introduction: Though urinary incontinence (UI) after prostate treatment often contributes to emotional distress and significantly impacts quality of life, many patients do not discuss this condition with their physicians. We analyzed the patient perspective by examining online support group posts to gain insight into specific challenges associated with different UI management methods. Methods: We examined discussion board threads from multiple patient‐focused forums on experiences of UI due to prostate treatment (threads from January 2016 to January 2022). Principles of grounded theory in thematic analysis were used to analyze the threads. Results: Three hundred and eighteen posts from 84 unique users were analyzed. Among users, 47 (56%) reported UI following radical prostatectomy (RP), 5 (6%) secondary to radiation therapy (RT), 12 (14%) after a combination of RP and RT, and 20 (24%) were ambiguous. UI management methods included pads/diapers/liners, condom catheters/external clamps, Kegels/pelvic floor physiotherapy, and surgical treatment (artificial urinary sphincter or sling placement). We identified challenges common to all management methods: “requires trial and error,” “physical discomfort,” and “difficult to be in public.” Factors influencing management choices included the ability to “feel normal” and the development of a management routine. Conclusion: The current study identifies opportunities for improved expectation‐setting and education regarding post‐procedural UI and its management. These findings can serve as a guide for providers to counsel patients on the advantages and disadvantages of UI management devices.