Using social media for patient-reported outcomes: A study of genital appearance and sexual function in adult bladder exstrophy patients

摘要

IntroductionThere have been few prior studies on patient-centered outcomes of adults with bladder exstrophy; those performed have been single institution reviews. In collaboration with the Association for the Bladder Exstrophy Communities (ABeC) – an international support network for patients and families living with bladder exstrophy – an anonymous social media survey was performed of patient-reported genital appearance and erectile function. ObjectiveThe study evaluated the Penile Perception Score (PPS) and the International Index of Erectile Function (IIEF-15) in adult men with bladder exstrophy. It was hypothesized that scores would be significantly lower than prior reported scores for men without the condition. Study designAfter review by an anonymous patient advocate volunteer, the ABeC performed an anonymous online survey using social media. ResultsAdult men with bladder exstrophy reported PPS, and satisfaction with penile length and axis that were lower than prior published controls (n?=?54,P?