{
  "abstract": "Objective Sjögren’s is a chronic systemic autoimmune disease characterised by dryness symptoms (eyes, mouth, skin), alongside other systemic manifestations such as fatigue, muscle and joint pain, neuropathies and organ involvement. Despite its prevalence, research into the patient perspective of Sjögren’s is limited. This study aimed to better understand the burden, unmet needs and treatment satisfaction among adults with Sjögren’s.Methods Data were collected using a cross-sectional survey of adult patients with Sjögren’s across China, France, Germany, Italy, Japan, Spain, the UK and the USA (December 2023 to September 2024). Patients were recruited via physicians or patient advocacy organisations. The Work Productivity and Activity Impairment (WPAI) tool assessed work-related productivity and daily activity impact. Analyses were descriptive.Results 1155 patients completed the survey. Mean (SD) age was 54.5 (13.0) years; 88.2% were female and 95.3% white. Most frequently reported symptoms were dry mouth, dry eyes, dry skin, physical fatigue/tiredness and joint stiffness/soreness. High emotional burden from Sjögren’s (rating 5–7 out of 7) was reported by 57.7%. WPAI scores showed 46.6% work and 48.4% activity impairment. Of those receiving prescription therapy, 77.2% were dissatisfied and/or believed disease control could improve. Among those not fully satisfied, 52.9% felt current treatments only addressed symptoms, not the underlying systemic nature of Sjögren’s.Conclusion The Spotlight on Sjögren’s study reveals the substantial, multifaceted burden of Sjögren’s, extending beyond dryness to significantly impair physical, emotional and functional well-being. Findings underscore the need for comprehensive, patient-centred care and therapies addressing both symptoms and the underlying systemic disease.",
  "authors": [
    {
      "affiliations": [
        "Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, USA"
      ],
      "name": "Jessica Marvel"
    },
    {
      "affiliations": [
        "Novartis AG, Basel, BS, Switzerland"
      ],
      "name": "Gayle Kenney"
    },
    {
      "affiliations": [
        "Sjogren’s Foundation Inc, Reston, Virginia, USA"
      ],
      "name": "Janet Church"
    },
    {
      "affiliations": [
        "Department of Rheumatology, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK",
        "HRB Clinical Research Facility, University College Cork, Cork, Ireland"
      ],
      "name": "Wan-Fai Ng"
    },
    {
      "affiliations": [
        "Rheumatology, Scripps Memorial Hospital La Jolla, San Diego, California, USA"
      ],
      "name": "Robert Fox"
    },
    {
      "affiliations": [
        "Division of Rheumatology, Department of Internal Medicine, Keio University School of Medicine, Tokyo, Japan"
      ],
      "name": "Yuko Kaneko"
    },
    {
      "affiliations": [
        "Environmental Medicine, Kochi Medical School, Nankoku, Japan",
        "Japanese Sjögren’s Association for Patients, Tokyo, Japan"
      ],
      "name": "Kaori Komori"
    },
    {
      "affiliations": [
        "Adelphi Real World, Bollington, UK"
      ],
      "name": "Gavin Harper"
    },
    {
      "affiliations": [
        "Adelphi Real World, Bollington, UK"
      ],
      "name": "Lucy Howard"
    },
    {
      "affiliations": [
        "Adelphi Real World, Bollington, UK"
      ],
      "name": "Thom Dewar"
    },
    {
      "affiliations": [
        "Adelphi Real World, Bollington, UK"
      ],
      "name": "Morgan Fox"
    }
  ],
  "title": "Spotlight on Sjögren’s: a patient perspective on burden of illness and unmet needs – results from a real-world survey",
  "uid": "a936336a-332b-5d68-9c3a-177c781d52a0"
}