Background/Purpose: Primary Sjogren’s syndrome is a highly heterogeneous condition, with limited understanding of the burden of disease. The objective of this study was to describe the patient profile and disease burden of patients with primary Sjogren’s syndrome (pSS).

Methods: Data were drawn from the Adelphi primary Sjögren’s syndrome Disease Specific Programme™, a real-world point-in-time survey of rheumatologists and their consulting pSS patients in the United States. Rheumatologists provided data about patient demographics and clinical characteristics. Derived EULAR Sjogren’s Syndrome Disease Activity Index (ESSDAI) scores were calculated for each patient by assigning a score to the rheumatologists’ perception of “not present”, “mild”, “moderate” or “severe” for each of the twelve domains of the ESSDAI. Patients self-completed patient reported outcome (PRO) tools including the EuroQol 5-Dimension utility score (EQ-5D), Work Productivity and Activity Impairment questionnaire (WPAI) and The Functional Assessment of Chronic Illness Therapy – Fatigue (FACIT-F). Derived EULAR Sjogren’s Syndrome Patient-Reported Index (ESSPRI) scores were calculated using the patients’ rating of dryness, fatigue, and pain.

Results: Rheumatologists (n=84) provided data for 511 pSS patients, mean age 53.3 years, 88.5% female, 79.8% white/Caucasian and mean time since diagnosis 4.6 years. Classes of treatment patients were receiving at the time of data collection are shown in Figure 1. Dry eyes and dry mouth were the most prevalent symptoms, present in 86.3% and 62.6% of patients respectively. Almost three quarters of patients (74.8%) experienced physical fatigue and over a third of patients (35.8%) experienced muscle pain at the time of data collection. Most patients experienced articular involvement, with 4.1% of patients experiencing no organ involvement, Table 1. Over half (55.8%) of patients were considered moderate-severe in terms of their derived ESSDAI score at the time of data collection, Table 1. At diagnosis of pSS, 14.9% of patients were considered severe by their physician, 59.7% moderate and 25.4% mild. At the time of consultation 3.9% of patients were severe, 39.9% moderate and 56.2% mild. Scores from PRO tools indicate the impairment that patients experience in everyday life and whilst at work, which worsens with physician-perceived current severity of pSS, Table 2.

Conclusion: Patients experience sicca symptoms and organ involvement, with physical fatigue affecting the majority of patients. Over half of patients are classified moderate-severe in terms of derived ESSDAI scores, despite many patients receiving off-label systemic therapies. PRO scores show patients experience a burden of disease impacting their daily life and work.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/describing-the-disease-burden-of-primary-sjogrens-syndrome-patients-results-from-a-real-world-survey-in-the-us/