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Expert recommendations for the management of faecal incontinence in systemic sclerosis: a report from the World Scleroderma Foundation gastrointestinal ‘ad hoc committee’

jsrd · 2026-06-17 · canonical JSON source

7 visible annotations · policy: published · automated confidence ≥ 75.00%

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Background Faecal incontinence (FI) affects up to 50% of patients with systemic sclerosis (SSc), significantly impairing quality of life and daily functioning. Despite its prevalence, patients may not disclose their symptoms, and there is limited guidance on evaluation and management. Given the complexity of SSc and delays in gastroenterology referrals, rheumatologists often initiate care. To address this gap, an expert panel was convened to develop practical, consensus-based recommendations for assessing and managing SSc-FI.Methods An international Steering Board (n=19) was assembled under the auspices of the World Scleroderma Foundation gastrointestinal (GI) ad hoc committee, including clinicians from rheumatology, gastroenterology and GI surgery, as well as a methodology expert and a patient representative. A working definition of SSc-FI was established. Draft recommendations were developed through a literature review and expert consensus. Two rounds of online voting were conducted, requiring ≥75% agreement in round one and ≥60% in round two for inclusion.Results In the first and second voting rounds, participation rates were 63.2% and 84.2%, respectively. All 22 draft recommendations were approved, with most (21) reaching consensus in the first round. Recommendations span five domains: general management approach (n=3); clinical assessment and non-pharmacological interventions (n=7 and n=3, respectively); management of FI in the context of diarrhoea (n=5); and alternative interventions and strategies (n=4).Conclusion These are the first practical recommendations for managing SSc-related FI. They emphasise a structured, multidisciplinary approach to care, highlight unmet clinical needs and lay the foundation for a research agenda to advance the understanding and treatment of this under-recognised complication in patients with SSc.