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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.