MP51-04 THE EXSTROPHY EXPERIENCE: A NATIONAL SURVEY ASSESSING URINARY CONTINENCE, BLADDER MANAGEMENT, AND ONCOLOGIC OUTCOMES IN ADULTS

Abstract

You have accessJournal of UrologyPediatric Urology IV (MP51)1 Sep 2021MP51-04 THE EXSTROPHY EXPERIENCE: A NATIONAL SURVEY ASSESSING URINARY CONTINENCE, BLADDER MANAGEMENT, AND ONCOLOGIC OUTCOMES IN ADULTS Natalia Arias Villela, Kelly Harris, Ridwan Alam, Wayland Wu, Rachel Davis, Pamela Artigas, Heather Di Carlo, and John Gearhart Natalia Arias VillelaNatalia Arias Villela More articles by this author , Kelly HarrisKelly Harris More articles by this author , Ridwan AlamRidwan Alam More articles by this author , Wayland WuWayland Wu More articles by this author , Rachel DavisRachel Davis More articles by this author , Pamela ArtigasPamela Artigas More articles by this author , Heather Di CarloHeather Di Carlo More articles by this author , and John GearhartJohn Gearhart More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000002077.04AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: The bladder exstrophy-epispadias complex (BEEC) is a rare spectrum of congenital genitourinary malformations with an incidence of 1:10,000 to 1:50,000. Advances in reconstructive surgical techniques have improved clinical outcomes, but there is a paucity in data about disease sequela in adulthood. This is the largest survey to date in the United States exploring the urinary continence, bladder management, and oncologic outcomes in adults with BEEC. METHODS: Respondents were over the age of 18 with a diagnosis of bladder exstrophy, cloacal exstrophy, or epispadias. They were treated at the authors’ institution, included in the Association for the Bladder Exstrophy Community (ABeC) mailing list, and/or engaged in ABeC social media. A survey was created using uniquely designed questions and validated questionnaires. Survey responses between May 2020 and July 2020 were processed using Research Electronic Data Capture. Quantitative and qualitative statistics were used to analyze the data with significance at p<0.05. RESULTS: A total of 159 patients completed the survey. The median age was 31.5 years (IQR 25.9-45.9). Most patients (>70%) considered themselves continent of urine, with a median satisfaction score of 74 (IQR 50-97) on a scale from 0 to 100. There was less leakage among those with a continent urinary diversion compared to those who void or catheterize per urethra (p=0.003). Patients with intestinal-urinary tract reconstruction, such as augmentation cystoplasty or neobladder creation, were more likely to perform bladder irrigations (p=0.03). There was no difference in urinary tract infection (UTI) (p=0.497) or recurrent UTIs (p=0.117) among patients with and without intestinal-urinary tract reconstruction. Three (1.9%) patients were diagnosed with bladder cancer. A small portion of patients (27.2%) were given bladder cancer surveillance recommendations by a physician. CONCLUSIONS: Most patients achieved a satisfactory level of urinary continence, with the best outcomes in those with a continent urinary diversion. Those with intestinal-urinary tract reconstruction were more likely to perform bladder irrigations, perhaps to avoid complications from intestinal mucous production. The rates of UTI and recurrent UTIs were not affected by the type of genitourinary reconstruction. Bladder cancer rate was low although long-term follow-up is needed. Periodic monitoring of the upper urinary tract and bladder cancer surveillance is likely beneficial in this patient population. Source of Funding: None © 2021 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 206Issue Supplement 3September 2021Page: e897-e897 Advertisement Copyright & Permissions© 2021 by American Urological Association Education and Research, Inc.MetricsAuthor Information Natalia Arias Villela More articles by this author Kelly Harris More articles by this author Ridwan Alam More articles by this author Wayland Wu More articles by this author Rachel Davis More articles by this author Pamela Artigas More articles by this author Heather Di Carlo More articles by this author John Gearhart More articles by this author Expand All Advertisement Loading ...