Seattle Children’s and A-BE-C publish results of study surveying adult men with bladder exstrophy
Researchers at Seattle Children’s Hospital in collaboration with Association for the Bladder Exstrophy Community (A-BE-C) recently published results of a study surveying adult male patients about genital appearance and erectile function. It is the first research study to focus on genital perception in adult men with bladder exstrophy.
The results are available in the Journal of Pediatric Urology. They highlight how patient advocacy groups like A-BE-C can be vital partners for medical research studies, helping connect researchers with people affected by bladder exstrophy at every stage of life.
Study surveyed adult male bladder exstrophy patients on genital appearance and erectile function
Through an anonymous online survey, valuable information about patient-reported genital appearance and erectile function was gathered. The study evaluated the Penile Perception Score (PPS) and the International Index of Erectile Function (IIEF-15). Researchers found that scores on both indexes were low for men with bladder exstrophy. Worse perception of genital appearance was associated with worse sexual satisfaction.
The findings will help health care professionals better counsel families with a new diagnosis and contribute to improving treatment for adult men.
It is thanks to participation from people in the A-BE-C community that this study was possible.
As with most rare conditions, very little medical literature exists about bladder exstrophy. Few research studies are conducted, and even fewer focus on the patient’s perspective of living with the condition as an adult. With only one in every 30,000 births affected, the research population for bladder exstrophy is simply too small and globally located, making it difficult for researchers to identify and connect with potential study participants.
A-BE-C is a valued partner for bladder exstrophy research
“As a trusted hub of information and support within the bladder exstrophy community, A-BE-C is in a unique position to bridge the gap between researchers and potential study participants,” says Executive Director Pamela Block.
A-BE-C conducted social media, email marketing and web marketing campaigns about the study, allowing researchers to leverage the advocacy group’s robust network to help spread the word and gather participants.
In the published results, researchers point out that the use of social media is a novel tool for patient-centered outcomes research, and that continued collaboration with patients and patient advocate groups is vital.
Research of this kind helps build the body of medical literature around bladder exstrophy and informs future research and treatment. It is thanks to participation from people in the A-BE-C community that this study is possible.
Based on the success of this survey, Seattle Children’s and A-BE-C are now working together to conduct a similar study of adult women with bladder exstrophy.