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

      Summary

      Introduction

      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.

      Materials and methods

      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.

      Results

      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 respondents, 28.5% (N = 37) were treated for uterine prolapse, 56.9% (N = 74) required surgery in order to use tampons or have penetrative intercourse, and over half (55.4%) reported some degree of dissatisfaction with the appearance of their external genitalia. Forty-seven women (36.2%) reported pregnancies, and of these 32 (68.1%) reported complications with pregnancy. Outcomes of 100 pregnancies included miscarriage/abortion (41.0%), preterm vaginal (3.0%), preterm cesarean section (19.0%), term vaginal (2.0%), and term cesarean section (35.0%). Seven (15.2%) women identified having children with a medical diagnosis, none of which included BE. Infertility was reported in 17.3% (22/127) women. Women identified sexual function, fertility, and body image as areas that need future research.

      Conclusion

      Summary TablePatient Characteristics, Urinary and Sexual Outcomes.
      Number of women 130
      Median age, years (Interquartile Range, IQR) 30 (26, 41)
      Country of birth
       United States 86/130, 66.2%
       Canada 9/130, 7.0%
       United Kingdom 6/130, 4.6%
       Australia 8/130, 6.2%
       Others (Algeria, Croatia, Germany, Italy, Finland, South American countries, Spain, Switzerland, Sweden, Turkey) 21/130, 16.2%
      Median number of surgeries (IQR) 10∗ (5, 17)
      Bladder Management
       Voids per urethra 25/130, 19.2%
       Catheterization per urethra 20/130, 15.4%
       Catheterizable channel 57/130, 43.8%
       Suprapubic tube 4/130, 3.1%
       Urostomy 11/130, 8.5%
       Other 13/130, 10.0%
      Mean ICIQ-SF ± SD (N=127) 6.2 ± 6.2
      Mean FSFI ± SD (N=125) 20.1 ± 9.0
      ∗n = 126 respondents for this question.

      Keywords

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