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J Pediatr Urol. 2018 Aug;14(4):322.e1-322.e6. doi: 10.1016/j.jpurol.2018.05.029. Epub 2018 Jul 9.

Using social media for patient-reported outcomes: A study of genital appearance and sexual function in adult bladder exstrophy patients.

Author information

1
Division of Pediatric Urology, Seattle Children's Hospital, Seattle, USA. Electronic address: Courtney.Rowe@seattlechildrens.org.
2
Division of Pediatric Urology, Seattle Children's Hospital, Seattle, USA.

Abstract

INTRODUCTION:

There have been few prior studies on patient-centered outcomes of adults with bladder exstrophy; those performed have been single institution reviews. In collaboration with the Association for the Bladder Exstrophy Communities (ABeC) - an international support network for patients and families living with bladder exstrophy - an anonymous social media survey was performed of patient-reported genital appearance and erectile function.

OBJECTIVE:

The study evaluated the Penile Perception Score (PPS) and the International Index of Erectile Function (IIEF-15) in adult men with bladder exstrophy. It was hypothesized that scores would be significantly lower than prior reported scores for men without the condition.

STUDY DESIGN:

After review by an anonymous patient advocate volunteer, the ABeC performed an anonymous online survey using social media.

RESULTS:

Adult men with bladder exstrophy reported PPS, and satisfaction with penile length and axis that were lower than prior published controls (n = 54, P < 0.05). Orgasmic function, sexual desire, and overall satisfaction were also lower (n = 46, P < 0.05). There was no difference in erectile function or intercourse satisfaction compared to controls. There was an association between PPS and erectile function, intercourse satisfaction, and overall satisfaction (P < 0.05) (Summary Fig.). Respondents identified urinary issues, genital appearance, and sexual function as the three main domains that warranted further research.

CONCLUSION:

This study found that PPS and IIEF-15 were low in adult men with bladder exstrophy, and worse perception of genital appearance was associated with worse sexual satisfaction. Social media is a novel tool for patient-centered outcomes research, and continued collaboration with patients and patient advocate groups is vital.

KEYWORDS:

Bladder exstrophy; International index of erectile function; Patient-centered outcomes; Penile perception score; Sexual function; Social media

PMID:
30078549
DOI:
10.1016/j.jpurol.2018.05.029
[Indexed for MEDLINE]

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