Spotlight on Sjögren's: A patient perspective on burden of illness and unmet needs - Results from a real-world survey

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.