SooHoo Michelle, Baker Zoë, Do Christine, Lavoie Callum, Montano Zorash, Kysh Lynn, Dillon Hannah, Vasquez Evalynn
Division of Urology, Children's Hospital Los Angeles, Los Angeles, CA, USA.
Division of Urology, Children's Hospital Los Angeles, Los Angeles, CA, USA; Office of the VP of Research Development, Arizona State University, Tucson, AZ, USA.
J Pediatr Urol. 2024 Dec;20(6):1044-1056. doi: 10.1016/j.jpurol.2024.09.013. Epub 2024 Sep 21.
The exstrophy-epispadias complex (EEC) is a spectrum of rare congenital defects affecting the genitourinary system that includes epispadias, bladder exstrophy, and cloacal exstrophy. EEC patients may require several surgeries throughout their lifetime and experience a number of difficulties that may impact their quality of life (QoL), mental health, and psychosocial functioning.
The purpose of this scoping review is to systematically map existing literature that explores the mental health, psychosocial functioning, and QoL of children and adolescents with EEC.
A search strategy on multiple bibliographic databases was created using a combination of Medical Subject Headings (MeSH) and keywords for the concepts of bladder exstrophy, cloacal exstrophy, or epispadias.
The initial search identified 6303 unique articles. 254 articles were selected for full-text review, and 76 articles were identified for data extraction. Articles were excluded if they solely focused on adults. 25 articles are included in this review regarding child and adolescent experiences with EEC.
Many child-focused studies utilized HRQoL measures to explore changes to an individual's quality of life after undergoing specific continence surgeries, with many studies finding improved QoL after surgery. As children age into adolescence, the research also demonstrates that experiences with QoL may change, with additional differences by gender. Body- and self-image seemed to become more of a concern as patients aged into adolescence, with special consideration for cloacal exstrophy patients who often undergo routine neonatal assignment genetic male to female.
The existing literature suggests that current measures do not demonstrate that children and adolescents with EEC function differently than the general population, but children with EEC have a greater likelihood of experiencing a wide range of emotional and behavioral problems as they reach adolescence. Future studies should further explore manifestations of mental health and QoL throughout the life course.
膀胱外翻-尿道上裂复合畸形（EEC）是一系列影响泌尿生殖系统的罕见先天性缺陷，包括尿道上裂、膀胱外翻和泄殖腔外翻。EEC患者一生中可能需要多次手术，并经历许多可能影响其生活质量（QoL）、心理健康和社会心理功能的困难。
本范围综述的目的是系统梳理探索EEC儿童和青少年心理健康、社会心理功能和生活质量的现有文献。
使用医学主题词（MeSH）和膀胱外翻、泄殖腔外翻或尿道上裂概念的关键词组合，在多个书目数据库上创建了检索策略。
初步检索识别出6303篇独特文章。选择254篇文章进行全文审查，识别出76篇文章进行数据提取。仅关注成人的文章被排除。本综述纳入了25篇关于儿童和青少年EEC经历的文章。
许多以儿童为重点的研究使用健康相关生活质量（HRQoL）测量方法来探索个体在接受特定控尿手术后生活质量的变化，许多研究发现手术后生活质量有所改善。随着儿童步入青少年期，研究还表明生活质量体验可能会发生变化，且存在性别差异。随着患者步入青少年期，身体和自我形象似乎变得更受关注，对于经常在新生儿期进行常规性别指定从遗传男性变为女性的泄殖腔外翻患者，需格外考虑。
现有文献表明，目前的测量方法并未显示EEC儿童和青少年的功能与一般人群有差异，但EEC儿童在进入青春期时更有可能出现广泛的情绪和行为问题。未来的研究应进一步探索生命全程中心理健康和生活质量的表现。
