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Patient-reported outcomes in adult female bladder exstrophy patients: A study of long-term sexual, reproductive, and urinary outcomes using social media
Katie L. Canalichio, MD1, Jennifer Ahn, MD1, Pamela Artigas, B.S.2, Anne-Marie Amies Oelschlager, MD3, Courtney Rowe, MD4, Paul Merguerian, MD1, Margarett Shnorhavorian, MD1.
1Seattle Children's Hospital, Seattle, WA, USA, 2Association for the Bladder Exstrophy Communities, Saint Petersburg, FL, USA, 3University of Washington, Seattle, WA, USA, 4University of Connecticut, Hartford, CT, USA.

Background: 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 the long term patient reported sexual, reproductive and urinary outcomes. We hypothesize that these outcomes scores are worse than controls. 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. The results of these surveys were compared to other published reports and controls. 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%). Women reported a median of 10 (IQR 5, 16.8) surgeries performed for their condition. The mean ICIQ-SF score was 6.19 6.19 (moderate) compared to 10.3 (moderate) in a published report in women with BE (Bujons et al). Bladder management is detailed in Figure 1, showing only 19.2% (N=25) reporting volitional voiding and the majority on intermittent catheterization through a catheterizable channel or the urethra. The mean FSFI score was much lower compared to previously published controls without BE (20.1 9.0 versus 30.5 5.29), indicating risk for sexual dysfunction defined as FSFI score < 26 (Table 1). 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%) reported some degree of dissatisfaction with the appearance of their external genitalia. Forty-seven women (36.2%) reported pregnancies, and of these 32 (68.0%) reported complications with pregnancy. Outcomes of 100 pregnancies included miscarriage/abortion (41%), preterm vaginal (3%), preterm cesarean section (19%), term vaginal (2%), and term cesarean section (35%). Seven (14.9%) 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. Conclusions: This is the largest study of patient reported outcomes in females with BE. We found that continence and sexual function were both impaired in adult women with BE. We found poor gynecological patient reported outcomes including infertility, uterine prolapse, vaginal stenosis, and need for multiple surgeries. Obstetric complications were also noteworthy. This survey highlights the need for research in sexual function, genital reconstruction and fertility. Social media can be a good resource to evaluate patient reported outcomes in patients with rare conditions.

Table 1: Female Sexual Function Index (FSFI) Survey Responses
DomainItem NumbersThis Study (Mean/SD)Control Rosen et al 2000 (Mean/SD)
Desire1,23.5/1.46.9/1.89
Arousal3,4,5,63.6/2.016.8/3.62
Lubrication7,8,9,103.7/2.118.6/3.17
Orgasm11,12,133.3/2.112.7/3.16
Satisfaction14,15,163.9/1.812.8/3.03
Pain17,18,192.2/1.813.9/2.78
Total---20.1/9.030.5/5.29

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