Initial Experience of Pediatric Urology Consortium in Taking Care of Children with Bladder Exstrophy: the Search for the
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PEDIATRIC BLADDER DYSFUNCTION (J THOMAS AND D CLAYTON, SECTION EDITORS)
Initial Experience of Pediatric Urology Consortium in Taking Care of Children with Bladder Exstrophy: the Search for the Holy Grail Dana A. Weiss 1 & Elizabeth Roth 2 & Travis Groth 2 & Aseem R. Shukla 1 & John V. Kryger 2 & Joseph G. Borer 3 & Michael E. Mitchell 2 & Douglas A. Canning 1
# Springer Science+Business Media, LLC, part of Springer Nature 2020
Abstract Purpose of Review The bladder exstrophy-epispadias complex is a very rare and complex spectrum of congenital anomalies. The holy grail of treatment for BEEC is volitional voiding with preservation of the upper tracts and patient satisfaction. The development of a collaboration can increase the exposure and experience for a panel of surgeons to better improve the care of babies with this anomaly, both in the surgical correction and in the pre- and post-operative care. Recent Findings The reported outcomes after exstrophy repair vary widely due to different approaches to closure as well as the variable outcome measures used to report experiences. While it is yet too soon to report on final continence outcomes, over the last 6 years, a collaboration between three institutions has increased by three-fold the experience for every individual under the guidance of an experienced coach. Summary The treatment of patients with bladder exstrophy and epispadias is a complex anatomic and physiologic process that requires careful attention to a precise surgery while also focusing on the long-term growth of the bladder and keeping the upper tracts safe. This collaboration, which is predicated on a dedicated team with a focused target, has increased experience and exposure to exstrophy for all institutions. Keywords Bladder exstrophy . Collaboration . CPRE
Introduction The bladder exstrophy-epispadias complex (BEEC) is a spectrum of congenital abnormalities that ranges in severity from distal epispadias to classic bladder exstrophy (CBE) to complete cloacal exstrophy [1]. Distal epispadias is relatively easy to correct and carries little long-term urinary or genital risk. But more proximal epispadias, bladder exstrophy, and cloacal exstropy, which are associated with omphalocele, imperforate This article is part of the Topical Collection on Pediatric Bladder Dysfunction * Dana A. Weiss [email protected] 1
Division of Urology, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
2
Division of Urology, Children’s Hospital Wisconsin, Milwaukee, WI, USA
3
Department of Urology, Boston Children’s Hospital, Boston, MA, USA
anus, and spinal anomalies, are difficult to reconstruct and almost never result in normal sexual or urinary function. BEEC is a rare anomaly, with the most common variant, classic bladder exstrophy (BE), occurring in 1:30–50:000 live births [2–4]. Cloacal exstrophy occurs less frequently, with an incidence of 1:300–400,000 [5], and isolated epispadias occurs in 1:200,000 males, and 1:400,000 females. For the purpose of this review, we will address classic bladder e
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