Advertisement

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

      Summary

      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

      Summary Fig
      Graphical AbstractAssociation between Penile Perception Score (PPS) and International Index of Erectile Function (IIEF-15). *P < 0.05 on linear regression.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Journal of Pediatric Urology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Castagnetti M.
        • Tocco A.
        • Capizzi A.
        • Rigamonti W.
        • Artibani W.
        Sexual function in men born with classic bladder exstrophy: a norm related study.
        J Urol. 2010; 183: 1118-1122https://doi.org/10.1016/j.juro.2009.11.029
        • Jochault-Ritz S.
        • Mercier M.
        • Aubert D.
        Short and long-term quality of life after reconstruction of bladder exstrophy in infancy: preliminary results of the QUALEX (QUAlity of Life of bladder EXstrophy) study.
        J Pediatr Surg. 2010; 45: 1693-1700https://doi.org/10.1016/j.jpedsurg.2010.03.032
        • Taskinen S.
        • Suominen J.S.
        • Mattila A.K.
        Health-related quality of life and mental health in adolescents and adults operated for bladder exstrophy and epispadias.
        Urology. 2015; 85: 1515-1519https://doi.org/10.1016/j.urology.2015.02.020
        • Pennison M.C.
        • Mednick L.
        • Grant R.
        • Price D.
        • Rosoklija I.
        • Huang L.
        • et al.
        A survey to assess body and self-image in individuals with bladder exstrophy: a call for psychosocial support.
        J Urol. 2013; 190: 1572-1576https://doi.org/10.1016/j.juro.2013.02.028
        • Baumgartner T.S.
        • Lue K.M.
        • Sirisreetreerux P.
        • Metzger S.
        • Everett R.G.
        • Reddy S.S.
        • et al.
        Long-term sexual health outcomes in men with classic bladder exstrophy.
        BJU Int. 2017; 157C: 321https://doi.org/10.1111/bju.13866
        • Schlomer B.
        • Breyer B.
        • Copp H.
        • Baskin L.
        • Disandro M.
        Do adult men with untreated hypospadias have adverse outcomes? A pilot study using a social media advertised survey.
        J Pediatr Urol. 2014; 10: 672-679https://doi.org/10.1016/j.jpurol.2014.01.024
        • Weber D.M.
        • Schönbucher V.B.
        • Landolt M.A.
        • Gobet R.
        The Pediatric Penile Perception Score: an instrument for patient self-assessment and surgeon evaluation after hypospadias repair.
        J Urol. 2008; 180 (discussion1084): 1080-1084https://doi.org/10.1016/j.juro.2008.05.060
        • Rosen R.C.
        • Riley A.
        • Wagner G.
        • Osterloh I.H.
        • Kirkpatrick J.
        • Mishra A.
        The international index of erectile function (IIEF): a multidimensional scale for assessment of erectile dysfunction.
        Urology. 1997; 49: 822-830
        • Rynja S.
        • Bosch R.
        • Kok E.
        • Wouters G.
        • de Kort L.
        IIEF-15: unsuitable for assessing erectile function of young men?.
        J Sex Med. 2010; 7: 2825-2830https://doi.org/10.1111/j.1743-6109.2010.01847.x
        • Rosen R.C.
        • Cappelleri J.C.
        • Gendrano N.
        The international index of erectile function (IIEF): a state-of-the-science review.
        Int J Impot Res. 2002; 14: 226-244https://doi.org/10.1038/sj.ijir.3900857
        • Salem H.K.
        • Eisa M.
        Long-term follow-up (18-35 years) of male patients with history of bladder exstrophy (BE) repair in childhood: erectile function and fertility potential outcome.
        J Sex Med. 2012; 9: 1466-1472https://doi.org/10.1111/j.1743-6109.2011.02536.x
        • Rubenwolf P.
        • Thomas C.
        • Thüroff J.W.
        • Stein R.
        Sexual function, social integration and paternity of males with classic bladder exstrophy following urinary diversion.
        J Urol. 2016; 195: 465-470https://doi.org/10.1016/j.juro.2015.08.076
        • Traceviciute J.
        • Zwink N.
        • Jenetzky E.
        • Reutter H.
        • Hirsch K.
        • Stein R.
        • et al.
        Sexual function and quality of life in adult male individuals with exstrophy-epispadias complex - a survey of the German CURE-network.
        Urology. 2017; https://doi.org/10.1016/j.urology.2017.08.063
        • Pennison M.C.
        • Mednick L.
        • Rosoklija I.
        • Grant R.
        • Price D.
        • Huang L.
        • et al.
        Health related quality of life in patients with bladder exstrophy: a call for targeted interventions.
        J Urol. 2014; 191: 1553-1557https://doi.org/10.1016/j.juro.2013.09.089

      Linked Article