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

doi:10.1016/j.urology.2017.08.063

Urology

Volume 112, February 2018, Pages 215-221

https://doi.org/10.1016/j.urology.2017.08.063 Get rights and content

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.

Section snippets

Study Population

CURE-Net is a multicenter population-based study from Germany, investigating environmental and genetic risk factors, clinical implications, and psychosocial and psychosexual outcomes for individuals with congenital urorectal malformations. Since 2009, clinical and epidemiological data about EEC patients had been collected with the support of the self-help group Blasenekstrophie/Epispadie e.V. (www.blasenekstrophie.de) as well as pediatric urologists and pediatric surgeons throughout Germany. In

Medical Data

Overall, 19 individuals with EEC (median age of 26 years, interquartile range 22-38 years) completed all self-reported questionnaires, resulting in a response rate of 37%. The majority of them had classical bladder exstrophy (n = 16; 84%), 3 individuals had epispadias. Initially, a single-stage reconstruction was performed in 6 individuals (31.5%), a staged reconstruction in 7 individuals (37%), and a primary urinary diversion in 6 individuals (31.5%). After the initial bladder reconstruction,

Discussion

To our knowledge, this is the first multicenter study using standardized questionnaires for evaluation of sexual function and QoL in male EEC adults in Germany. Although the CURE-Net database included a considerable amount of male adults, the response rate of this follow-up study was moderate (37%).1, 7, 16 However, it is consistent with the correspondent CURE-Net female study in 2016¹⁷ and the study by Gupta et al.⁴ Comparing available data of the nonresponders vs participants did not show

Conclusion

This unique multicenter study independently reports nationwide data about sexual function and QoL in male adults with EEC. The IIEF-15 questionnaire consistently detected mild to moderate ED in our cohort. Comparing SF-36 domains between the study group and German population showed no statistical significance in the general QoL. Subgroup analysis, however, revealed QoL impairment for men suffering from any kind of incontinence and those who were dissatisfied with their genital cosmetic

Acknowledgment

The author would like to thank all patients who participated again in this project.

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Cited by (6)

Exstrophy-Epispadias Complex
2023, Urologic Clinics of North America
Urological, Sexual, and Quality of Life Evaluation of Adult Patients With Exstrophy-Epispadias Complex: Long-term Results From a Dutch Cohort
2020, Urology
Citation Excerpt :
Clear explanation for this is lacking and therefore it needs to be confirmed in larger studies. It would actually be expected that men with BEEC would score lower on the PCS because the appearance of the genitals is generally different despite multiple surgical corrections.20 It would be interesting to determine outcomes in a larger group of male patients combined with a penile perception score as used in hypospadias follow-up.21
To assess urological function, sexual function, and quality of life in patients with exstrophy or epispadias. Little is known regarding these outcomes in adult patients; our aim is to determine where improvements are needed for long-term management.
The study population comprised adult (>18 years) patients. Demographic data were gathered and patients were asked to fill out 4 validated questionnaires: (1) International Consultation on Incontinence Questionnaire urinary incontinence form (ICIQ-UI) regarding continence; (2) International Prostate Symptom Score (IPSS) for men and International Consultation on Incontinence Questionnaire-Female Lower Urinary Tract Symptoms (ICIQ-FLUTS) for women regarding lower urinary tract symptoms; (3) 12-Item Short Form Health Survey regarding quality of life; (4) International Index of Erectile Function for men and Female Sexual Function Index for women regarding sexual function.
Seventeen patients were included (9 men and 8 women) with a median age of 36 years (range 19-73). Median score on ICIQ-UI was 5/21. Median IPSS score was 7/35 and median quality of life score was 1 (=pleased). Median scores per domain within ICIQ-FLUTS were 7 for storage, 0 for voiding, and 6 for urinary incontinence with bother scores of 4, 0, and 2.8, respectively. Scores for 12-Item Short Form Health Survey in the study population were comparable with those of the Dutch population, except for Physical Component Summary in women. For sexual function, no difference was found between those in the general population and our participants except for the domain "pain" in Female Sexual Function Index.
Adult patients with exstrophy or epispadias have a high rate of incontinence and lower urinary tract symptoms with relatively low to some degree of bother. When compared with the general population, quality of life, and sexual function of our patients were more or less similar.
Using social media for patient-reported outcomes: A study of genital appearance and sexual function in adult bladder exstrophy patients
2018, Journal of Pediatric Urology
Citation Excerpt :
Alternatively, negative surgical outcomes and postoperative complications likely influence both genital appearance, and erectile and ejaculatory function. The low scores of the respondents for PPS and IIEF-15 are similar to prior single institution publications for PPS and IIEF-15 in adult men with bladder exstrophy [1,5,11–13] and support the conclusions of these prior studies without concern for the bias inherent in studying their own patients. While Baumgartner et al. found an association between age of adult men with bladder exstrophy and the two measures of sexual function they surveyed (Sexual Health Inventory for Men and Male Sexual Health Questionnaire for assessing ejaculatory dysfunction), the current study found no association between age and either of the validated surveys.
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.
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.
After review by an anonymous patient advocate volunteer, the ABeC performed an anonymous online survey using social media.
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.
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.
Health-Related Quality of Life in Patients with the Bladder Exstrophy-Epispadias Complex and Relationship to Incontinence and Sexual Factors: A Review of the Recent Literature
2020, European Journal of Pediatric Surgery
Health-related quality of life among children, adolescents, and adults with bladder exstrophy–epispadias complex: a systematic review of the literature and recommendations for future research
2019, Quality of Life Research
Needs assessment in care of adults with anorectal malformations and exstrophy-epispadias complex in Germany
2018, Frontiers in Pediatrics

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

Objective

Patients and Methods

Results

Conclusion

Section snippets

Study Population

Medical Data

Discussion

Conclusion

Acknowledgment

J Urol

J Sex Med

J Pediatr Surg

J Urol

J Urol

Urology

J Urol

J Urol

J Urol

J Urol

Coping with bladder exstrophy: diverse results from early attempts at functional urinary tract surgery

BJU Int

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