Patient-reported outcomes in adult females with bladder exstrophy: A study of long-term sexual, reproductive and urinary outcomes using social media.

Journal of Pediatric Urology
Katie L CanalichioMargarett Shnorhavorian

Abstract

Limited data exist on patient-reported outcomes in adults with bladder exstrophy (BE). We partnered with the Association for the Bladder Exstrophy Community (A-BE-C) using social media to survey adult females with BE. The aim of the study was to assess long-term patient-reported sexual, reproductive and continence outcomes. Between December 3, 2018 and January 18, 2019, A-BE-C promoted an anonymous survey of adult females with BE on social media. The survey included the Female Sexual Function Index (FSFI) and International Consultation on Incontinence Questionnaire - Short Form (ICIQ-SF) in addition to questions on demographics, reproductive and gynecological outcomes. A total of 130 women with a median age of 30 years (IQR 26, 41) completed the survey. The majority of women were born in the United States (N = 86, 66.2%). Women reported a median of 10 (IQR 5, 17) surgeries performed for their condition. The mean ICIQ-SF score was 6.2 ± 6.2 (moderate). Only 19.2% (N = 25) reported volitionally voiding and the majority reported intermittent catheterization through a catheterizeable channel or the urethra (Summary Table). The mean FSFI score was (20.1 ± 9.0), indicating risk for sexual dysfunction (FSFI < 26.55). Of the respondent...Continue Reading

References

Jul 1, 2004·Neurourology and Urodynamics·Kerry AveryPaul Abrams
Oct 18, 2011·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·Csaba SiffelRichard S Olney
Sep 24, 2013·BJU International·Angela D GuptaDan Wood
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Jun 13, 2016·Journal of Pediatric Urology·Anna BujonsHumberto Villavicencio
Oct 12, 2018·World Journal of Urology·Elsa BeySimone Frédérique Brenière
Mar 8, 2020·Journal of Pediatric Urology·Piyush PathakRanjiv I Mathews

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Citations

Jul 21, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Emily G MillerMeghan C Halley
Aug 16, 2021·Journal of Pediatric Urology·Katie L CanalichioMargarett Shnorhavorian

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