Abstract

Abstract Background Ulcerative Colitis (UC) in childhood is associated with a higher risk of developing acute severe colitis and colectomy compared to adult populations. Following subtotal colectomy, the rectal remnant is typically oversewn and remains in-situ until ileal continuity surgery is undertaken. Access to such surgical expertise determines the timing of restorative surgery, which may range from months to years. There is a paucity of data regarding residual rectal activity during this interval, its medical management and clinical outcomes. Methods An electronic survey (SurveyMonkey) of clinical practice was disseminated to the paediatric inflammatory bowel disease (PIBD) community internationally. Data collected included treating centre demographics, local colectomy practices, expert opinion on rectal cuff assessment and management. Clinicians were asked to rank order the symptoms and signs considered most relevant to determining disease activity. They also ranked the clinical features they believed most important to patients. Descriptive statistics were used to present findings. Results Responses were collated from over 10 countries, including Ireland, Sweden, UK, Australia, Israel, Canada, Iran, Finland, UAE and Austria. Centre sizes were categorised based on total PIBD population. There was heterogeneity across centres - 16% of respondents were from small volume centres in the range of 0-100 patients, 45% were from medium sized centres (101-300), 25% were from large volume centres (301-500) and 12% treat >500 patients which we categorised as very large volume. Despite variation in centre volume majority of respondents (75%) diagnose >20 new cases of UC annually. Over 90% of respondents reported having no formal guideline for managing rectal disease. Most centres’ patients (60%) waited at least 3 months post-colectomy for restoration surgery. Mild intermittent symptoms were expected to continue by 60% of respondents. Of these symptoms, 45% ranked haematochezia as the most important in determining severity. There was no consensus on the best assessment tool to use; 30% use the PUCAI. Most (80%) use blood markers and endoscopy routinely to assess rectal activity. Favoured treatments include rectal therapy (80%) followed by oral steroids and surgical referral. All respondents agreed that additional research was needed. Conclusion International management of the rectum following subtotal colectomy in children is characterised by variable clinical practises, and a lack of guidelines or validated assessment tools. Additional research in the field is needed to address current literature deficits and improve care for children.

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