Introduction: The exstrophy-epispadias complex (EEC) is a collection of rare congenital conditions affecting the urinary system. Currently, there is not a clear consensus on the psychosocial functioning, mental health (MH) status, or health-related quality of life (HRQoL) of individuals with EEC. The aim of this scoping review was to synthesize the existing literature related to the MH status, psychosocial functioning, and HRQoL 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. Two independent reviewers performed abstract screening of 5431 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: A total of 66 articles met inclusion criteria and were included in this review. 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; however, while overall QoL 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.