Expert recommendations for the management of fecal incontinence in systemic sclerosis: A report from the World Scleroderma Foundation (WSF) Gastrointestinal "Ad hoc committee".

Background: Fecal 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 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 diarrhea (n=5); and alternative interventions and strategies (n=4). Conclusion: These are the first practical recommendations for managing SSc-related FI. They emphasize 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 underrecognized complication in patients with SSc.