Sexual function in adult patients with classic bladder exstrophy: A multicenter study
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
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Sexual health outcomes after penile reconstruction in the exstrophy–epispadias complex
2022, Journal of Pediatric UrologyCitation Excerpt :ED is more common in CBE patients compared to normal adult males and, in our series all patients including patients reconstructed using lengthening as well those born with epispadias reported a degree of ED [21]. There are mixed reports on the influence of EEC on sexual functions including sexual desire or the ability to experience an orgasm [5,22,23]. In our study, all 27 patients reported having satisfactorily masturbated before reconstruction, though when assessing engagement in sexual intercourse, Suominen et al. observed a significantly decreased number of patients ever had compared to age-matched controls, p = 0.008 [5].
Bladder exstrophy: We need to improve. A lot
2022, Journal of Pediatric UrologyCitation Excerpt :Based on our findings, we believe we should reconsider the hierarchy of objectives in BE surgery and recognize that sexual/genital correction is as important as achieving continence [13]. Intercourse is less frequently reported in males than females [10]. This may be related to sexual avoidance, spoiled self-image and fear of rejection or bullying.
Urological, Sexual, and Quality of Life Evaluation of Adult Patients With Exstrophy-Epispadias Complex: Long-term Results From a Dutch Cohort
2020, UrologyCitation Excerpt :This finding is consistent with previous studies.13-15 In all, 71% of the participants were in a committed relationship, which is higher than reported by some authors16,17 but comparable with others.14,18 It should be noted that good performance in school and occupation does not need explicit announcement about BEEC, but to have a committed relationship does require open communication between patients and partners.
Male Sexuality, Fertility, and Urinary Continence in Bladder Exstrophy-Epispadias Complex
2018, Journal of Sexual MedicineEvaluation of sexual function in females with exstrophy-epispadias-complex: A survey of the multicenter German CURE-Net
2017, Journal of Pediatric UrologyQuality of life in female patients with bladder exstrophy-epispadias complex: Long-term follow-up
2016, Journal of Pediatric UrologyCitation Excerpt :The extraordinary adaptability and resilience of BEEC patients is highlighted by their close to normal QoL scores, together with their uneventful academic and occupational development and their social relationships (with only 10% of patients without a partner in our study). It has been repeatedly reported how proper medical and psychosocial support aids young women affected by BEEC to develop emotional and practical mechanisms to cope with their serious condition, and to manage their condition so that it does not prevent them from taking part in physical and social activities, personal relationships, or maternity [13–15]. Despite this remarkably normal functioning, treatment of BEEC targeted towards the best possible QoL still poses many challenges, with patients most concerned about continence and the impact of their body image and sexual dysfunction on intimate relationships [1,10,16].