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- Title
Ensuring our exstrophy-epispadias complex patients and families thrive.
- Authors
Haddad, Emily; Hayes, Lillian C.; Price, Diane; Vallery, Christina G.; Somers, Michael; Borer, Joseph G.
- Abstract
Individuals with bladder exstrophy-epispadias complex (EEC) need long-term integrated medical/surgical and psychosocial care. These individuals are at risk for medical and surgical complications and experience social and psychological obstacles related to their genitourinary anomaly. This care needs to be accessible, comprehensive, and coordinated. Multiple surgical interventions, reoccurring hospitalizations, urinary and fecal incontinence, extensive treatment regimens for continent diversions, genital differences, and sexual health implications affect the quality of life for the EEC patient. Interventions must include psychosocial support, medical literacy initiatives, behavioral health services, school and educational consultation, peer-to-peer opportunities, referrals to disease-specific camps, mitigation of adverse childhood events (ACEs), formal transition of care to adult providers, family and teen advisory opportunities, and clinical care coordination. The priority of long-term kidney health will necessitate strong collaboration among urology and nephrology teams. Given the rarity of these conditions, multi-center and global efforts are paramount in the trajectory of improving care for the EEC population. To achieve the highest standards of care and ensure that individuals with EEC can thrive in their environment, multidisciplinary and integrated medical/surgical and psychosocial services are imperative.
- Subjects
BLADDER exstrophy; SOCIAL support; FAMILIES; EPISPADIAS; HOSPITAL care; QUALITY of life; URINARY incontinence; FECAL incontinence; SEXUAL health
- Publication
Pediatric Nephrology, 2024, Vol 39, Issue 2, p371
- ISSN
0931-041X
- Publication type
Article
- DOI
10.1007/s00467-023-06049-y