Sexual Function and Quality of Life in Adult Male Individuals with Exstrophy-Epispadias Complex - a Survey of the German CURE-Network

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 uro-rectal malformations (CURE-Net) were used.

51 males (≥18 years) recruited by CURE-Net between 2009 and 2012 were re-contacted per mail and asked to fill out four 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, sexual experience. The SF-36 results were compared to general German population.

19 males (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. 74% 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 to German population. Subgroup analysis showed statistically significant lower results in certain SF-36 domains in regard to incontinence, dissatisfaction with genital appearance and antihypertensive drug intake.

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.

Urology. 2017 Nov 07 [Epub ahead of print]

J Traceviciute, N Zwink, E Jenetzky, H Reutter, K Hirsch, R Stein, W H Rösch, A K Ebert

Department of Urology, University Medical Center Göttingen, Göttingen, Germany. Electronic address: ., Division of Clinical Epidemiology and Aging Research, German Cancer Research Center, Heidelberg, Germany; Department for Child and Adolescent Psychiatry, Johannes Gutenberg-University, Mainz, Germany., Division of Clinical Epidemiology and Aging Research, German Cancer Research Center, Heidelberg, Germany; Department for Child and Adolescent Psychiatry, Johannes Gutenberg-University, Mainz, Germany; Child Center Maulbronn, Hospital for Paediatric Neurology and Social Paediatrics, Maulbronn, Germany., Institute of Human Genetics, University of Bonn, Bonn, Germany; Department of Neonatology, Children's Hospital, University of Bonn, Bonn, Germany., Department of Paediatric Urology, University Hospital Erlangen, Erlangen, Germany., Department of Paediatric and Adolescent Urology, University of Mannheim, Mannheim, Germany., Department of Paediatric Urology, Clinic St. Hedwig, University Medical Center Regensburg, Regensburg, Germany., Department of Urology and Paediatric Urology, Ulm University, Ulm, Germany.