Objective
To investigate sexual function and quality of life (QoL) in adult male individuals
with exstrophy-epispadias complex (EEC). Data from the German Network for Congenital
Urorectal Malformations (CURE-Net) were used.
Patients and Methods
Fifty-one male participants (≥18 years) recruited by CURE-Net between 2009 and 2012
were re-contacted per mail and asked to fill out 4 questionnaires including International
Index of Erectile Function (IIEF-5), Cologne Assessment of Erectile Dysfunction (KEED),
the Short-Form 36 (SF-36), and one self-designed questionnaire about their medical
history, current health status, and sexual experience. The SF-36 results were compared
with general German population.
Results
Nineteen male participants (37%) completed all questionnaires (median age 26 years,
84% classical bladder exstrophy). The majority (68%) was reconstructed in a staged
or single-staged approach; further 32% had a primary urinary diversion. Seventy-four
percent of the participants reported a certain degree of urinary incontinence. Mean
IIEF-15 results showed mild to moderate or moderate impairment in all domains. The
SF-36 results revealed no difference in the German population. Subgroup analysis showed
statistically significant lower results in certain SF-36 domains with regard to incontinence,
dissatisfaction with genital appearance, and antihypertensive drug intake.
Conclusion
Although there is no difference in overall QoL comparing male individuals with EEC
to the general German population, incontinence, dissatisfaction with genital appearance,
and taking antihypertensive medication seem to have a considerable impact on QoL.
Furthermore, mild to moderate erectile dysfunction and moderate intercourse satisfaction
were confirmed, suggesting the need for further improvement in care for adult male
individuals with EEC.
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Article info
Publication history
Published online: November 07, 2017
Accepted:
August 29,
2017
Received:
March 28,
2017
Footnotes
Financial Disclosure: The authors declare that they have no relevant financial.
Funding Support: This work was done in the context of the “Network for Systematic Investigation of the Molecular Causes, Clinical Implications and Psychosocial Outcome of Congenital Uro-Rectal Malformations (CURE-Net)” and supported by a research grant (01GM08107) from the German Federal Ministry of Education and Research (Bundesministerium für Bildung und Forschung, BMBF) 2009-2012. Statistical calculations are supported by the German Research Foundation (Deutsche Forschungsgemeinschaft, DFG), funding signs JE681/3-1 (2013-2015), EB521/2-1, and JE681/4-1 (2015-2018). HR was supported by a grant from the DFG (RE 1723/1-1). http://www.cure-net.de.
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