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Mental Health, Psychosocial Functioning, and Health-Related Quality of Life of Children, Adolescents, and Adults with Bladder Exstrophy, Cloacal Exstrophy, and Epispadias: A Scoping Review
Michelle SooHoo, PhD, ZoŽ G. Baker, PhD, Hannah Dillon, BS, Lynn Kysh, MLIS, YuDing Wang, MD, Arthi Hannallah, MD, Zorash Montano, PhD, Evalynn Vasquez, MD, MBA.
Children's Hospital Los Angeles, Los Angeles, CA, USA.

BACKGROUND: The exstrophy-epispadias complex (EEC) is a collection of rare congenital conditions affecting the urinary system. While some studies have reported that individuals with EEC face greater mental health (MH) comorbidities and decreased quality of life (QOL), other studies have found no association between EEC and MH status or QOL. Currently there is not a clear consensus on the psychosocial functioning, MH status, or health-related quality of life of individuals with EEC. The aim of this scoping review is to synthesize the existing literature related to the mental health status, psychosocial functioning, and QOL of individuals with EEC across the life course.
METHODS: Databases including PubMed, Embase, Cochrane Library, CINAHL, Web of Science, PsycINFO, ERIC, and Google Scholar were searched from inception using preidentified key terms. References of included studies and publications from relevant non-profit organizations were also reviewed. Two independent reviewers performed abstract screening of 5,431 articles, followed by full-text review of 245 articles (Figure 1). All articles including primary analysis on the psychosocial functioning, MH status, or QOL of individuals with EEC were included in the review, and recurring themes were identified.
RESULTS: Sixty-six articles were included in this review (Figure 1), comprising results from 2,148 unique patients. Findings suggest that MH status and QOL change across the life course in individuals with EEC. Children with EEC demonstrate more externalizing behaviors, while adolescents and adults with EEC demonstrate higher levels of internalizing behaviors and psychological distress, particularly anxiety. Additionally, children appear to demonstrate improved QOL after surgery to improve continence. While overall QOL among individuals with EEC is comparable to the general population, adolescents and adults experience lower QOL in the areas of self-care and general health. CONCLUSIONS: While many individuals diagnosed with EEC experience QOL that is equal to that of the general population, experiences with incontinence, concerns about the appearance of genitalia, and anxiety surrounding the condition do affect MH, psychosocial functioning, and HRQOL in individuals across the life course.


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