Lifelong Congenital Urology: The Challenges for Patients and Surgeons

Abstract Context Patients born with complex congenital genitourinary anomalies (including bladder exstrophy, cloacal exstrophy, epispadias, neurogenic bladder, hypospadias and posterior urethral valves) often require major reconstructive surgery in childhood. These conditions, their treatment and sequelae require lifelong follow-up. This has created the need for adult urologists to provide care as these patients grow into adults. Objective To evaluate current strategies for transition and provide a current position statement with examples of the challenges faced by patients and their health care teams as a result of these conditions and their treatment. Evidence acquisition Each of the authors was asked to provide a 500-word synthesis, based on current literature; to highlight the challenges faced in an area of their expertise. Evidence synthesis The authors assembled in March 2018 to form a consensus based on the data gathered. The aforementioned sections were reviewed and following the consensus discussion the paper was formulated and reviewed. Conclusions Lifelong care of congenital problems is challenging and essential for many but not all. Expertise is needed to provide the best care for patients and make the best use of resources. Specialist centres appear to be the most effective and safe model. In the long term it would be ideal to establish an evidence base focused on the common long-term problems with these conditions to ensure excellent care with appropriate expertise. Patient summary Patients born with complex congenital anomalies of the genitourinary system require specialist care in childhood. Many will need lifelong care to manage their condition and the treatment of it. There is growing interest in this area of medicine and this consensus statement addresses the need for lifelong care in this group. The aim is to ensure that all patients that need care at any age are able to find what they need.