UCSF

Objective

To describe the patient experience and chief concerns with urethroplasty to improve physician understanding and patient education. Online discussion boards allow patients with urethral stricture disease (USD) to connect with other USD patients. It is unknown how men use these web resources and what information is available about urethroplasty.

Methods

Three online forums featuring urethroplasty were identified by Google search. Thematic analysis categorized the content of posts using manually applied codes, with inter-rater reliability and descriptive statistics generated by Dedoose (Los Angeles, CA).

Results

A total of 140 unique posters contributed 553 posts to the forums. Posts were categorized as information support (n = 651), issues posturethroplasty (n = 470), own experience preurethroplasty (n = 336), feelings towards other posters (n = 312), what to expect posturethroplasty (n = 265), feelings after urethroplasty (n = 228), and considerations before urethroplasty (n = 134). Experience navigating the healthcare system with USD (n = 141) and weak urine stream (n = 70) were the most frequent preurethroplasty complaints. Postoperative pain (n = 164) was the most frequent issue. Patients expressed more positivity (n = 126) and satisfaction (n = 120) than negativity (n = 33) with urethroplasty.

Conclusion

Patients participated in online discussions to share experiences with USD and urethroplasty, receive emotional support, and find answers. Men were more often satisfied than not with their urethroplasty outcomes, with 88% of postoperative feelings coded as positive or satisfied compared to negative. This study provides physicians with insight into the experiences of patients and how to best educate them.