Faculty of Medicine and Health Sciences, University of Antwerp, Universiteitsplein 1 Wilrijk, Antwerp, 2610, Belgium.
Department of Urology, University College London Hospitals, 16-18 Westmoreland Street, London, United Kingdom.
J Pediatr Urol. 2023 Feb;19(1):36.e1-36.e7. doi: 10.1016/j.jpurol.2022.10.013. Epub 2022 Oct 13.
Bladder exstrophy and epispadias complex (BEEC) is a spectrum of congenital malformations ranging from an isolated epispadias to a full exstrophy. It is an uncommon disease and little is known on how patients cope with its implications later in life.
The goal of this study is to assess the sexual, continence and fertility outcomes of BEEC patients, who had reconstructive bladder surgery during childhood. Considering the sensitive nature of these topics, they are not easily spoken about in the doctor's office. Our aim is to shed some light on possible points of improvement in follow-up.
63 patients between 18 and 45 years old were sent an electronic questionnaire based on previous existing standardized questionnaires. They were asked about sexual and psychosexual wellbeing, urinary incontinence and fertility. Data from their medical files (medical history on previous surgeries). and questionnaire answers are linked through an anonymous subject number and put into an Excel file for descriptive representation.
22 men and 8 women filled in the questionnaire. All but 2 are sexually active. Reasons to avoid sexual activity are equally divided as BEEC-related and non-BEEC-related. Sexual satisfaction is lower in the male group due to problems with erection, ejaculation, condom usage and embarrassment about physical appearance. In females problems concerning pain and reaching orgasm are mentioned. 30% report depressive feelings. There is a clear correlation between number of reconstructive surgeries and sexual satisfaction. 90% of patients urinate via catheterization, mostly through a Mitrofanoff connection. This leads to complications such as foul odors, infection, embarrassment and sexual dysfunction. 8 out of 13 men conceived a child (with the use of their own sperm), 2 out of 4 women did.
A strength of this study is the use of standardized questionnaires which allow comparison to a control patient group. Our study is one of the first to show how patients cope with the challenges of BEEC by the use of open questions. We see an overall high quality of life yet an important impact on mental health.
BEEC is associated with many challenges in the adult life of patients. A more holistic and interdisciplinary approach is needed to include sensitive topics in long term follow-up.
膀胱外翻和尿道上裂复合畸形（BEEC）是一种从单纯的尿道上裂到完全外翻的先天性畸形。它是一种罕见的疾病，对于患者在以后的生活中如何应对其影响知之甚少。
本研究旨在评估童年时期接受重建性膀胱手术的 BEEC 患者的性功能、控尿和生育能力。考虑到这些话题的敏感性，在医生办公室中不容易讨论。我们的目的是阐明在随访中可能需要改进的方面。
向 63 名年龄在 18 至 45 岁之间的患者发送了一份基于先前存在的标准化问卷的电子问卷。他们被问及性和性心理健康、尿失禁和生育能力。他们的医疗档案（以前手术的病史）中的数据和问卷答案通过一个匿名的主题编号链接，并放入一个 Excel 文件中进行描述性表示。
22 名男性和 8 名女性填写了问卷。除了 2 人以外，所有人都有性行为。避免性行为的原因同样分为 BEEC 相关和非 BEEC 相关。由于勃起、射精、使用避孕套和对身体外观的尴尬，男性组的性满意度较低。女性则提到了疼痛和达到性高潮的问题。30%的人报告有抑郁感。重建手术次数与性满意度呈明显相关。90%的患者通过导尿，主要通过米托法诺夫（Mitrofanoff）连接进行排尿。这会导致恶臭、感染、尴尬和性功能障碍等并发症。13 名男性中有 8 人（使用自己的精子）成功生育，4 名女性中有 2 人成功生育。
本研究的一个优势是使用了标准化问卷，允许与对照组患者进行比较。我们的研究是首次使用开放问题展示患者如何应对 BEEC 挑战的研究之一。我们看到整体生活质量很高，但对心理健康有重要影响。
BEEC 会给患者成年后的生活带来许多挑战。需要采取更全面和跨学科的方法，在长期随访中纳入敏感话题。
