Department of Pediatric Surgery, Karolinska University Hospital, Astrid Lindgren Children's Hospital, Stockholm, Sweden.
Department of Pediatric Surgery, Pediatric Uronephrologic Center at the Queen Silvia Childrens Hospital, Institution of Clinical Sciences, Sahlgrenskas University Hospital, Gothenburg Sweden.
Eur J Pediatr Surg. 2020 Jun;30(3):251-260. doi: 10.1055/s-0040-1713178. Epub 2020 Jun 21.
The bladder exstrophy-epispadia complex (BEEC) includes malformations with midline closing defects of the lower abdomen and external genitalia. Long-term consequences with urinary incontinence and sexual dysfunction, in spite of multiple surgical interventions, are common and expected to affect the patient's health-related quality of life (HRQOL). The extent and the predictive factors are, however, not known. New patient-reported outcome research is emerging, but valid and reliable condition-specific HRQOL are still missing. The aim of this review is to summarize and discuss the latest published reports (2015-2019) on HRQOL in patients with the BEEC and its relationship to incontinence and sexual factors.
膀胱外翻-尿道上裂复合畸形（BEEC）包括下腹和外生殖器中线闭合缺陷的畸形。尽管进行了多次手术干预，但仍常见长期尿失禁和性功能障碍等并发症，这预计会影响患者的健康相关生活质量（HRQOL）。然而，目前尚不清楚这些并发症的严重程度和预测因素。新的患者报告结果研究正在出现，但仍缺乏有效的、可靠的针对该疾病的特异性 HRQOL 评估工具。本综述的目的是总结和讨论 2015 年至 2019 年期间发表的有关 BEEC 患者 HRQOL 及其与尿失禁和性功能因素关系的最新报告。
