Urinary and Fecal Continence in Adolescent and Adult Patients With Cloacal Exstrophy

OBJECTIVE To evaluate the prevalence of urinary (UI) and fecal incontinence (FI) and the incontinence related quality of life (QoL) in adolescent and adult patients with cloacal exstrophy (CE) in Germany.PATIENTS AND METHODS CE-patients of a tertiary care center and the German support group for anorectal malformations(SoMA e.V.) were included (October 2015 until September 2020). Data were assessed using a composed questionnaire consisting of 18 self-generated questions and two validated German questionnaires (King's health questionnaire, Questionnaire on Quality of Life in Fecal Incontinence (FLQAI)).RESULTS Out of 23 included patients, 19 had continent and 3 incontinent urinary diversions (UD), 1 was unspecified; 2/23 were on dialysis. 73.7% (14/19) had undergone bladder augmentation, 4/19 had a pouch, 1/19 a neobladder. 94.7% (18/19) had a continent cutaneous channel and performed intermittent self-catheterization. UI was common (71.4%, 15/21). Neither the UD nor the involuntary loss of urine itself had a significant impact on QoL. Comparing the King's health questionnaire results, UI-related QoL of CE-patients was significantly lower than in a published reference group. 78.3% (18/23) had a bowel stoma. 34.8% (8/23) reported involuntary stool-soiling. Neither the way of bowel-emptying nor involuntary stool-soiling itself showed significant influence on FIrelated QoL in the FLQAI. FLQAI items showed significant differences only for one of two published reference groups.CONCLUSION Long-term incontinence rates in adolescent and adult CE-patients are high. Incontinence-related QoL was reduced compared to published reference groups but was minimally influenced by incontinence itself, the type of UD or the way of bowel-emptying, respectively. UROLOGY 164: 293 -299, 2022. (c) 2022 Elsevier Inc.