| Summary: | Introduction & Objective: Anorectal malformations are a spectrum of anomalies requiring surgery within the first days of life. Many patients have associated anomalies of the genitourinary tract, heart and spine. They may have a significant level of morbidity even after surgical repair. This study looks at the range and degree of morbidity that this group of patients experience. Methods: A cohort study was performed on adult patients treated at a tertiary referral paediatric hospital as children. Patients were invited to participate in the study those who agreed were sent questionnaires to complete consisting of validated questionnaires on urinary, bowel, sexual, quality of life, body image and fertility outcomes (paternity in males). On return of these questionnaires, patients were invited to attend clinic for a physical examination.;Results: 117 patients were contacted of whom 75 agreed to take part in the study (64%). The age range was 18-60 years (mean 26 years). 44 of the respondents were females and 31 were male. 57 passed urine without any assistance, 9 required intermittent self-catheterisation (ISC), and 7 had an appendico-vesicostomy, 1 had an ideal conduit and 1 patient expressed her bladder manually. Urinary incontinence was seen in 31 out of 75 respondents (41%). 44 out of the 75 (59%) were able to defecate without any assistance, the rest required assistance of some sort. 11 had an antegrade continence enema, 6 performed regular rectal washouts, 7 had permanent stomas, and 7 used medication to manipulate their bowel movements. Using the Cleveland clinic incontinence score 38 (51%) had either perfect or good continence, 29 (39%) had moderate to severe faecal incontinence. 8 of the 75 did not answer questions regarding their bowel function as they had permanent stomas. 45 of the 75 (60%) were in a relationship of whom 30 were cohabiting. 27 recorded pregnancies resulted in 20 live births, half of these were to the partners of the male participants. 66 were in full time employment or education with only 9 (12%) registered as disabled.;Conclusions: This study confirms that a significant level of morbidity exists within this patient group. Levels of urinary and faecal incontinence were high. Despite this the majority were in full time employment or education and 60% were in relationships.
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