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.
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Acknowledgements
We dedicate this review to the memory of Barbara Neilson MSW, RES. Dip S.W., RSW, Douglas A. Canning, MD, Blake W. Palmer MD, and Martin Situma MD who were leaders in EEC care, colleagues, mentors, and a source of inspiration for this review.
We acknowledge and are grateful for the contributions of Pamela Artigas, executive director of the Association for the Bladder Exstrophy Community (A-BE-C), and Dena Hanson MLS, AHIP, Cook Children’s Health Care System.
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Haddad, E., Hayes, L.C., Price, D. et al. Ensuring our exstrophy-epispadias complex patients and families thrive. Pediatr Nephrol 39, 371–382 (2024). https://doi.org/10.1007/s00467-023-06049-y
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DOI: https://doi.org/10.1007/s00467-023-06049-y