Ebert A, Scheuering S, Schott G, Roesch W H
Department of Pediatric Urology, Klinik St. Hedwig, University of Regensburg, Germany.
J Urol. 2005 Sep;174(3):1094-8. doi: 10.1097/01.ju.0000169171.97538.ed.
We report the psychosocial and psychosexual development of children and adolescents with the exstrophy-epispadias complex (EEC) after complete functional repair using the Erlangen single stage technique.
In a long-term retrospective followup of an average of 11.1 years 100 patients with EEC (76 boys and 24 girls, mean age 14.5 years) were evaluated with respect to medical history, and received a general questionnaire concerning their social and psychosocial situation. A total of 54 patients who were 15 years or older (mean age 18.5) received an additional questionnaire to assess detailed sexual history.
Of the patients 81% returned the general questionnaire within 3 weeks. School education level and social integration were high. In about 25% of the patients impairment of daily life was significant, and in 58.7% peer relations were altered. Of the adolescent group 76% answered the special questionnaire. Genital satisfaction and genital touching were rated low, and avoidance of nudity in public areas was common. All patients expressed heterosexuality and 43.9% had engaged in sexual intercourse but 58.5% displayed anxiety about sexual activity. It is noteworthy that 93.9% expressed an interest in psychological assistance.
Despite a high degree of social integration and adult adaptation, children and adolescents with EEC suffer from psychosocial and psychosexual dysfunction requiring special questionnaires for adequate assessment. Anxiety about genital appearance and sexual activity is a common phenomenon among adolescents with EEC, even when they present with nearly "normal" genitalia and participate with satisfaction in sexual activity. Further studies are needed to understand the exstrophy problem and supply all patients with EEC with the individual care they need.
我们报告了采用埃尔朗根单阶段技术进行完全功能修复后，患有膀胱外翻-阴茎头型尿道上裂综合征（EEC）的儿童和青少年的心理社会及性心理发育情况。
在一项平均为期11.1年的长期回顾性随访中，对100例EEC患者（76例男孩和24例女孩，平均年龄14.5岁）进行了病史评估，并收到了一份关于他们社会和心理社会状况的一般问卷。共有54例年龄在15岁及以上（平均年龄18.5岁）的患者收到了一份额外问卷，以评估详细的性史。
81%的患者在3周内返回了一般问卷。学校教育水平和社会融合程度较高。约25%的患者日常生活受到显著影响，58.7%的患者同伴关系发生改变。青少年组中76%回答了特殊问卷。生殖器满意度和生殖器触摸评分较低，在公共场所避免裸体很常见。所有患者都表达了异性恋倾向，43.9%的患者有过性行为，但58.5%的患者对性活动表现出焦虑。值得注意的是，93.9%的患者表示对心理援助感兴趣。
尽管社会融合程度高且成年适应良好，但患有EEC的儿童和青少年仍存在心理社会和性心理功能障碍，需要特殊问卷进行充分评估。即使患有EEC的青少年生殖器外观接近“正常”且对性活动满意参与，他们对生殖器外观和性活动的焦虑仍是常见现象。需要进一步研究以了解膀胱外翻问题，并为所有EEC患者提供他们所需的个性化护理。
