Presentation Authors: Benjamin Cedars*, Philadelphia, PA, Andrew Cohen, San Francisco, CA, Nima Baradaran, Columbus, OH, Medina Ndoye, Puneet Kamal, Benjamin Breyer, San Francisco, CA
Introduction: Online discussion boards allow patients with urethral stricture disease (USD) to connect with others afflicted with the disease. It is unknown how men use these web resources and what information is available related to urethroplasty, the definitive treatment for USD. In this study, we aimed to describe the patient experience and chief concerns with urethroplasty in order to improve physician understanding and patient education.
Methods: Three online discussion forums featuring urethroplasty were identified by a Google search. Codes were created to capture and categorize the content of patients' posts using a thematic analysis process. Three graders practiced applying codes to the same posts to assess agreement and came to a consensus on proper code rules. Codes were applied and descriptive statistics generated using Dedoose (Los Angeles, CA).
Results: A total of 141 unique posters contributed 553 posts to the forums. There were 5,151 code applications. The categories of posts included information support (n=651), feelings towards other posters (n=312), considerations before urethroplasty (n=134), own experience pre-urethroplasty (n=336), issues post-urethroplasty (n=472), feelings after urethroplasty (n=233), and what to expect post-urethroplasty (n=265). Experience navigating the healthcare system with urethral stricture disease (n=141) and weak urine stream (n=70) were the most prevalent pre-urethroplasty codes. Post-operative pain (n=166) was the most frequent issue. Patients expressed more positivity (n=126) and satisfaction (n=120) than negativity (n=38) with urethroplasty. Feelings after urethroplasty are summarized by their co-occurrence with post-operative issues (fig 1). Post-operative pain did not necessarily correlate with patient dissatisfaction.
Conclusions: Patients participated in online discussions to share their experiences with USD and urethroplasty, connect with others for emotional support, and find answers to their questions. Men were more often satisfied than not with the outcomes of urethroplasty. This study provides physicians with valuable insight into the experiences of their patients and how best to educate and guide them through the process. These resources could represent a novel avenue to elicit content for a PROM for USD.