Lee Celine, Reutter Heiko M, Grässer Melanie F, Fisch Margit, Noeker Meinolf
Zentrum für Kinderheilkunde, Universitätsklinikim Bonn, Bonn, Germany.
BJU Int. 2006 Feb;97(2):349-53. doi: 10.1111/j.1464-410X.2005.05910.x.
To identify problems in the long-term psychosocial and developmental outcome specific to patients with the bladder exstrophy-epispadias complex (BEEC), using a self-developed semi-structured questionnaire, as there are various techniques of reconstruction to repair BEEC but to date neither patients nor surgeons have a clear answer about which type gives the most acceptable long-term results.
Increasingly many patients with BEEC reach adulthood and wish to have sexual relationships and families. To date, no studies have used disease-specific psychological instruments to measure the psychosocial status of patients with BEEC. Thus we contacted 208 patients with BEEC, and 122 were enrolled, covering the complete spectrum of the BEEC. The data assessed included the surgical reconstruction, subjective assessment of continence, developmental milestones, school performance and career, overall satisfaction in life, disease-specific fears and partnership experiences in patients aged >18 years. We compared affected females and males to assess gender-associated differences in quality of life.
Affected females had more close friendships, fewer disadvantages in relation to healthy female peers and more partnerships than the males. Family planning seemed to be less of a problem in affected females. There were no gender differences in the adjustments within school and professional career, which was very good in general.
Future studies are needed to assess the disease-specific anxieties, considering gender-specific differences.
使用自行编制的半结构化问卷，确定膀胱外翻-尿道上裂复合畸形（BEEC）患者特有的长期心理社会和发育结局问题，因为修复BEEC有多种重建技术，但迄今为止，患者和外科医生都不清楚哪种类型能带来最可接受的长期效果。
越来越多的BEEC患者成年后希望建立性关系并组建家庭。迄今为止，尚无研究使用针对该疾病的心理测量工具来评估BEEC患者的心理社会状况。因此，我们联系了208例BEEC患者，招募了122例，涵盖了BEEC的整个范围。评估的数据包括手术重建、对控尿的主观评估、发育里程碑、学业成绩和职业、对生活的总体满意度、特定疾病恐惧以及18岁以上患者的伴侣关系经历。我们比较了受影响的女性和男性，以评估生活质量方面的性别差异。
与男性相比，受影响的女性有更多亲密的友谊，与健康女性同龄人相比劣势更少，且有更多的伴侣关系。计划生育在受影响的女性中似乎不是那么大的问题。在学校和职业生涯中的适应情况没有性别差异，总体情况非常好。
需要进一步研究，考虑性别差异，评估特定疾病的焦虑情况。
