ESPU Congress 2018 - Abstract Book

141 11–14 APRIL, 2018, HELSINKI, FINLAND 15:19–15:22 S18-4 (PP) CONTINENCE OUTCOME IN PATIENTS WITH EXSTROPHY- EPISPADIAS COMPLEX: A SURVEY OF THE MULTICENTER GERMAN CURE-NET Kathi ADAMCZYK  1 , Nadine ZWINK  2 , Ekkehart JENETZKY  3 , Eberhard SCHMIEDEKE  4 , Thomas M. BOEMERS  5 , Margit FISCH  6 , Karin HIRSCH  7 , Raimund STEIN  8 , Heiko REUTTER  9 , Wolfgang H. RÖSCH  10 and Anne Karoline EBERT  1 1) University Hospital Ulm, Department of Urology and Pediatric Urology, Ulm, GERMANY - 2) German Cancer and Research Center Heidelberg, Division of Clinical Epidemiology and Aging Research, Heidelberg, GERMANY - 3) University Medical Center Mainz, Department of Child and Adolescent Psychiatry and Psychotherapy, Mainz, GERMANY - 4) Klinikum Bremen-Mitte, Department of Pediatric Surgery and Pediatric Urology, Bremen, GERMANY - 5) University Hospital Köln, Department of Pediatric Surgery and Pediatric Urology, Köln, GERMANY - 6) University Hospital Hamburg-Eppendorf, Department of Pediatric Urology, Hamburg, GERMANY - 7) University Hospital Erlangen, Department of Pediatric Urology, Erlangen, GERMANY - 8) University Hospital Mannheim, Department of Pediatric Urology, Mannheim, GERMANY - 9) University Children's Hospital, Department of Neonatology, Bonn, GERMANY - 10) Klinik St. Hedwig, University Medical Center Regensburg, Department of Pediatric Urology, Regensburg, GERMANY PURPOSE To gain continence is a major aim in reconstruction of the exstrophy-epispadias complex (EEC). However, patients outcome perspective cannot be clearly determined, as continence rates and definitions reported in literature derived from monocentric small studies vary widely. MATERIAL AND METHODS Participants with EEC, 4 years or older, recruited by the German multicenter network for congenital uro-rectal malformations (CURE-Net) from 2009 to 2012 were asked to fill in micturation protocolls and a self-designed questionnaire about urinary and fecal continence, voiding habits and symp- toms. Continence definition was adapted to the ICCS terminology. RESULTS Self-reported data of 102 patients (median 13 years; 60 % male, 81 % classical bladder exstrophy) were analyzed. 94 participants were either reconstructed in a single-stage or a staged approach, among them 34 % having undergone further procedures, such as augmentations and stomata. 8 individuals (8 %) had a primary urinary diversion. 33 % reported continuous urinary continence, 29 % described themselves as intermittent incontinent and 28 % as continuous incontinent. 61 % of all participants required diapers. Subgroup analysis revealed no statistically significant difference regarding the phenotype (p=0.84) and the additional procedures (p=0.49). 14 % of participants (median age 17 years) reported some degree of stool incontinence, 79 % of them with the need for pads or diapers. CONCLUSIONS In a nationwide multicenter survey only one third of EEC participants reported continuous urinary continence. 14 % described fecal incontinence. These independent outcome data advocate the urgent necessity of improvement of the urinary and fecal continence status in patients with EEC at any age.