{
  "abstract": "Objective Systemic sclerosis (SSc) is a rare autoimmune disease characterised by progressive fibrosis affecting multiple organs. This study was set out to uncover disparities in healthcare access among Italian patients with SSc, identify actionable strategies for improving the patient care pathway and assess the costs of living with SSc.Methods A comprehensive 55-item multiple-choice questionnaire was distributed through the patient association Gruppo Italiano per la Lotta alla Sclerodermia, targeting individuals living with SSc. The survey explored patients’ experiences following diagnosis, access to treatments and the financial impact of the disease. An interdisciplinary expert panel convened to interpret the findings and develop recommendations.Results Out of 256 respondents, 40% had lived with SSc for more than 12 years suggesting a sample bias towards advanced disease stages. While nearly three-quarters (75%) were satisfied with their medical care, only 59% felt well-informed about available treatment options. Non-pharmacological therapies, such as physiotherapy, were underused with fewer than half of respondents reporting access. 61% of patients were responsible for covering their own expenses related to these services, pointing to significant gaps in public healthcare coverage. Economic and logistical challenges were widespread: 39% had skipped care due to long wait times or high costs and unpaid leave was common among both patients (15.5%) and their caregivers (38%). Overall, despite high satisfaction with direct medical care, considerable challenges remain in enhancing disease management, patient education, reducing socioeconomic burden and improving overall quality of life.Conclusion The findings highlight an urgent need for a structured, interdisciplinary chronic care model tailored to SSc. Priorities include expanding access to non-pharmacological therapies, strengthening patient education and addressing systemic barriers to care. These insights offer a roadmap toward more equitable, patient-centred healthcare for individuals living with SSc.",
  "authors": [
    {
      "affiliations": [
        "Patient advocate, Gruppo Italiano Lotta alla Sclerodermia (GILS), Milan, Italy",
        "Federation of European Scleroderma Associations (FESCA), Saint Maur, Belgium"
      ],
      "name": "Ilaria Galetti"
    },
    {
      "affiliations": [
        "Internal Medicine Department, Respiratory Unit and Cystic Fibrosis Centre, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy"
      ],
      "name": "Angela Bellofiore"
    },
    {
      "affiliations": [
        "Unit of Immunology, Rheumatology, Allergy and Rare Diseases, San Raffaele Hospital, Milan, Italy"
      ],
      "name": "Corrado Campochiaro"
    },
    {
      "affiliations": [
        "Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, Padua, Italy"
      ],
      "name": "Elisabetta Cocconcelli"
    },
    {
      "affiliations": [
        "Internal Medicine Department, Careggi University Hospital, Florence, Italy"
      ],
      "name": "Khadija El Aoufy"
    },
    {
      "affiliations": [
        "Regulatory Pharma Net, Sant’Anna School of Advanced Studies, Pisa, Tuscany, Italy"
      ],
      "name": "Salvatore Pirri"
    }
  ],
  "title": "Improving the patient care pathway in systemic sclerosis: insights from patients and clinicians in Italy",
  "uid": "aff89249-87dd-576e-bae6-6d2f249e644d"
}