Elsevier

Journal of Pediatric Urology

Volume 11, Issue 3, June 2015, Pages 125.e1-125.e6
Journal of Pediatric Urology

Sexual function in adult patients with classic bladder exstrophy: A multicenter study

https://doi.org/10.1016/j.jpurol.2015.02.001Get rights and content

Summary

Background

The bladder exstrophy–epispadias complex (BEEC) comprises a spectrum of congenital anomalies that represents the severe end of urorectal malformations, and has a profound impact on continence as well as sexual and renal functions.

Objective

The relation between severity of BEEC and its associated functional impairments, on one hand, and the resulting restrictions in quality of life and potential psychopathology determine the patients' outcome. It is important for improving further outcome to identify BEEC-related sources of distress in the long term. Genital function and sexuality becomes an important issue for adolescent and adult BEEC individuals. Hence, the present study focused on sexual function and psychological adaption in patients with BEEC.

Study design

In a multicenter study 52 patients (13 females, 39 males) with classic bladder exstrophy (BE) with their bladders in use were assessed by a self-developed questionnaire about sexual function, and psychosexual and psychosocial outcome. The patients were born between 1948 and 1994 (median age 31 years).

Results

Twelve of 13 (92%) females and 25 of 39 (64%) males with classic BE had answered the questions on sexual function. Of these, 50% females and 92% males answered that they masturbated. Females had sexual intercourse more frequently. Six (50%) females affirmed dyspareunia whereas only two (8%) males reported pain during erection. Eight (67%) females specified having orgasms. Eighteen (72%) males were able to ejaculate. Two males and none of the females lived in a committed partnership (Figure). Two (15%) females and 13 (33%) males answered all psychosocial questions. The majority of these patients had concerns about satisfactory sexuality and lasting, happy partnerships. A minority of patients of both sexes were willing to answer psychosocial questions. Sexual activity and relationships of many adult BE patients seems to be impaired. Not surprisingly, sexual activity and awareness were different in males and females even in a multi-organ anomaly.

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Figure. Sexuality of adult female and male bladder exstrophy patients.

Discussion

To date, one of the main goals of the medical treatment of BEEC/BE patients is to enable normal sexual life and fertility. However, only a few outcome studies have focused on these issues with contradicting results, most of them not using standardized outcome measures. In accordance with other studies, our female BE patients have dyspareunia and most of our male BE patients were able to ejaculate. But the question of normal force of ejaculation, ejaculated volume, or semen analysis remains unanswered. Despite partial confirmation of previous findings, there is inconsistency referring to the outcome measured by the available studies. This might in part be explained by the fact that, other than this study, most previous studies are the result of single-institution experience. Thus, selection bias in the patient sampling due to different a clinical collective in different hospitals may be the consequence. Furthermore, patients' honesty and self-reflection in answering difficult questions regarding their sexual and cosmetic impairments is questionable. In addition, studies include a wide range of age groups and are connected with this life period. Fears and condition-specific anxieties might change over time. Hence, the strengths of this study are the nationwide and treating physician-independent data acquisition as well as the large sample size of adult patients with a very rare congenital malformation. Unfortunately, more detailed analyses on sexual function and current psychosocial situation, for example correlation of data with clinical symptoms such as continence status, was not possible as data were mainly not answered by patients.

Conclusion

To improve the quality of life of patients with BEEC/BE, treatment and follow-up should emphasize physical but also psychological care in these patients. Physicians should further re-evaluate their preconceptions and should take care of the patients throughout their lives.

Introduction

The bladder exstrophy–epispadias complex (BEEC) still represents the most challenging field of pediatric reconstructive surgery. The resilience of affected children and adults is tested to its limits by numerous hospital stays, operations, physical stress, and incontinence [1], [2]. The last one represents a handicap that is a taboo in our society, and may interfere with normal everyday life and interfere severely with sexual function and wellbeing. In addition, till today there has been no adequate continence definition for BEEC patients or a method to better quantify continence status. Studies of adolescents and young adults of both sexes with BEEC have shown that urinary and fecal incontinence are the main predictors for mental health, with future worries about sexual relationships and psychosocial outcome [3]. The impairment of physical health is further illustrated by the fact that almost 95% of BEEC patients in Germany receive disability status and an even larger number require a nursing allowance [4]. Besides the named issues, genital function and sexuality become important issues for adolescent and adult BEEC individuals. However, only a few outcome studies have focused on these issues with contradicting results, most of them did not use standardized outcome measures [4], [5], [6], [7], [8], [9], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22], [23], [24], [25]. In general, it is almost impossible to cover all disease-specific implications of this severe anomaly and to map all the personal limitations and coping strategies with a survey instrument. Disease-specific assessment instruments are not available, and therefore evaluations may have lacked the sensitivity to detect specific functional impairments and psychosocial difficulties associated with genitourinary anomalies like BEEC [4], [26], [27]. Hence, the aim of the present multicenter study was to assess the sexual function and current psychosocial situation of adult classic bladder exstrophy (BE) patients as part of the BEEC.

Section snippets

Study population

Patients' data were used from the German Network for Congenital Uro-Rectal malformations (CURE-Net, http://www.cure-net.de), an ongoing, multicenter population-based study to investigate environmental and genetic risk factors, clinical implications, and psychosocial outcome for congenital urorectal malformations.

Cases with classic BE were identified and contacted through participating departments of pediatric urology and pediatric surgery from all over Germany and through the self-help

Baseline characteristics of the study population

In total, 52 adult patients with BE (13 females, median age 31 years; 39 males, median age 31 years) born between 1948 and 1994 were investigated (Table 1).

Relationship status

Twelve of 13 (92%) female and 25 of 39 (64%) male BE patients answered questions on sexual function (p = 0.077). Of these patients, none of the females and two (8%) of the males (age 24 and 57 years) answered living in a committed relationship at the time of data acquisition. One female (age 24 years) and five male patients (age 18, 22,

Discussion

To date, the ultimate goal of treatment and care in BEEC/BE patients has moved from mere survival to an enhancement of final quality of life requiring interdisciplinary treatment approaches. Based on our previous work [4], [26], [27], [28], the aim of the present study was to identify the sexual function and current psychosocial situation of adult classic BE patients as part of the BEEC.

The response rate of BE patients answering questions about their sexual function (females 92%, males 64%) is

Conclusions

It remains unclear why only a minority of the patients were willing to answer the psychosocial questionnaires. Sexual activity and relationships for many adult classic BE patients seems to be impaired. The relation between severity of the BEEC and its associated functional impairments, on one hand, and the resulting restrictions in quality of life and potential psychopathology, on the other hand, cannot be adequately conceptualized as a simple, linear function. Not surprisingly, sexual activity

Conflict of interest

None.

Funding

This study was supported by a research grant from the German Federal Ministry of Education and Research (Bundesministerium für Bildung und Forschung, BMBF), funding code 01GM08107 (2009–2012). Our Statistical calculations were supported by the German Research Foundation (Deutsche Forschungsgemeinschaft, DFG) under the funding code JE681/3-1 (2013–2015).

Acknowledgments

We thank all families and patients for their participation. We also thank the German self-help organizations “Selbsthilfegruppe Blasenekstrophie/Epispadie e.V.” and “Kloakenekstrophie”. N.Z., E.J., A.K.E., W.R., R.S., E.S., D.S., M.N., and H.R. are members of the “Network for the Systematic Investigation of the Molecular Causes, Clinical Implications, and Psychosocial Outcome of Congenital Uro-Rectal Malformations (CURE-Net)”, which was supported by a research grant from the German Federal

References (29)

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