The Recommendations of the 2015 American Urological Association Working Group on Genitourinary Congenitalism

To develop consensus recommendations for index congenital urological cases seen in adulthood and to generate discussion among providers who treat these patients across the lifespan. This manuscript reviews the proceedings and recommendations of the 2015 American Urological Association Working Group on Urological Congenitalism.

Index cases were selected to highlight controversies in the management of different congenital patients in adulthood. Cases were presented and participants were randomized to groups to avoid clustering of individuals of similar background and experience. Expert panelists (representing backgrounds in pediatric and adult care of congenital patients) also discussed the cases. After that, a facilitated discussion was held with the entire group in an attempt to develop consensus recommendations for the questions raised in each case.

Recommendations were generated related to management of pregnancy in young woman with bladder exstrophy and one with reflux nephropathy, as well as a young man with spina bifida with chronic kidney disease seeking undiversion.

Given the lack of long-term data for patients with congenital genitourinary diseases, management of complex urological disease in these patients can be difficult. Consensus discussion with urological providers across the spectrum of the life course of these patients may help provide clinical guidance.