A study of long-term sexual, reproductive and urinary outcomes using social media

You may remember a survey conducted in 2019 by Seattle Children’s and A-BE-C regarding adult females with exstrophy and their long-term sexual, reproductive, and urinary outcomes. We received an overwhelming response thanks to our amazing BE community.

The research team at Seattle Children’s has been focused on adding the patient perspective to the body of research on bladder exstrophy. The paper, “Patient-reported outcomes in adult female bladder exstrophy patients: A study of long-term sexual, reproductive, and urinary outcomes using social media”, focused on the experience for people living with this condition from their own perspective.

Dr. Katie Canalichio, lead author, then presented the paper at the Pediatric Urology Fall Congress Meeting to an audience of over 500 pediatric urologists.

The paper was recently published and can be found here.

Thank you to everyone who participated. Your voices are being heard and A-BE-C is proud to be part of this groundbreaking research!