{
  "abstract": "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.",
  "authors": [
    {
      "affiliations": [
        "UTHealth Houston, Department of Medicine, Division of Rheumatology, Houston, Texas, USA"
      ],
      "name": "Zsuzsanna H McMahan"
    },
    {
      "affiliations": [
        "Department of Experimental and Clinical Medicine, Azienda Ospedaliero Universitaria Careggi and University of Florence, Division of Internal Medicine, Florence, Italy"
      ],
      "name": "Maria Cristina De Santis"
    },
    {
      "affiliations": [
        "Department of Experimental and Clinical Medicine, Azienda Ospedaliero Universitaria Careggi and University of Florence, Division of Internal Medicine, Florence, Italy"
      ],
      "name": "Anna Lo Cricchio"
    },
    {
      "affiliations": [
        "Digestive System Research Unit, Digestive Diseases Department, Vall d’Hebron University Hospital, Barcelona, Spain"
      ],
      "name": "Luis G Alcala-Gonzalez"
    },
    {
      "affiliations": [
        "Division of Gastroenterology and Hepatology, Stanford University School of Medicine, Palo Alto, 300 Pasteur Drive, Room H0206B, CA, MC 5244,Stanford, California, USA"
      ],
      "name": "John Clarke"
    },
    {
      "affiliations": [
        "Department of Colorectal Surgery, Manchester University NHS Foundation Trust, Manchester, UK",
        "Faculty of Biology, Medicine and Health, The University of Manchester, Oxford Road, Manchester, M13 9PL, UK"
      ],
      "name": "Alexander O’Connor"
    },
    {
      "affiliations": [
        "Department of Experimental and Clinical Medicine, Division of Rheumatology, Scleroderma Unit, AOU Careggi, University of Florence, 50141 Florence, Italy"
      ],
      "name": "Silvia Bellando Randone"
    },
    {
      "affiliations": [
        "Centre for Rheumatology and Connective Tissue Diseases, UCL Medical School, Royal Free Campus, London, UK"
      ],
      "name": "Christopher Denton"
    },
    {
      "affiliations": [
        "FESCA (Federation of European Scleroderma Associations), Belgium, GILS (Gruppo Italiano, Lotta alla Sclerodermia (Italy), Milan, Italy"
      ],
      "name": "Ilaria Galetti"
    },
    {
      "affiliations": [
        "Inserm, EHESP, Irset -Institut de Recherche en Santé, Environnement et Travail-UMRS, University of Rennes CHU Rennes, Rennes, France",
        "Department of Internal Medicine and Clinical Immunology, CHU Rennes, Rennes, France"
      ],
      "name": "Alain Lescoat"
    },
    {
      "affiliations": [
        "IRCCS San Raffaele Hospital, Unit of Immunology, Rheumatology, Allergy and Rare diseases (UnIRAR), & Inflammation, fibrosis and ageing initiative (INFLAGE), IRCCS San Raffaele Scientific Institute, Milano, Italy",
        "Vita-Salute San Raffaele University, Milan, Italy"
      ],
      "name": "Marco Matucci-Cerinic"
    },
    {
      "affiliations": [
        "University of Udine, Division of Surgery and Transplantation, Department of Surgery, Udine, Italy"
      ],
      "name": "Pietro Matucci-Cerinic"
    },
    {
      "affiliations": [
        "Division of Diabetes, Endocrinology and Gastroenterology, Faculty of Biology, Medicine and Health, The University of Manchester and Northern Care Alliance NHS Foundation Trust, Salford Care, Manchester, UK"
      ],
      "name": "John Mclaughlin"
    },
    {
      "affiliations": [
        "Digestive Disease and Surgery Institute, Cleveland Clinic London Ltd, London, UK"
      ],
      "name": "Charles Murray"
    },
    {
      "affiliations": [
        "Division of Rheumatology, University of California Los Angeles, David Geffen School of Medicine, Los Angeles, California, USA"
      ],
      "name": "Elizabeth R Volkmann"
    },
    {
      "affiliations": [
        "Department of Life, Health and Environmental Sciences, Internal Medicine and Nephrology Division, ASL1 Avezzano-Sulmona-L’Aquila, University of L’Aquila, L’Aquila, Italy"
      ],
      "name": "Alessia Alunno"
    },
    {
      "affiliations": [
        "Department of Experimental and Clinical Medicine, Azienda Ospedaliero Universitaria Careggi and University of Florence, Division of Internal Medicine, Florence, Italy"
      ],
      "name": "Giulia Bandini"
    },
    {
      "affiliations": [
        "Centre for Musculoskeletal Research, Division of Musculoskeletal and Dermatological Science, School of Biological Sciences, Faculty of Biology Medicine and Health, The University of Manchester, Manchester, UK",
        "Department of Rheumatology, Northern Care Alliance NHS Foundation Trust, Salford Care Organisation, Salford, UK",
        "NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester, UK"
      ],
      "name": "Michael Hughes"
    }
  ],
  "title": "Expert recommendations for the management of faecal incontinence in systemic sclerosis: a report from the World Scleroderma Foundation gastrointestinal ‘ad hoc committee’",
  "uid": "0a6df56c-2b69-5e9b-bf4a-0e8afbdad4dd"
}