ArticleACR open rheumatology2026
Patient Journey, Disease Burden, Treatment Patterns, and the Impact of Delayed Diagnosis Among Patients With Sjögren's Disease: A Real-World US Survey.
Article in ACR open rheumatology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
objectiveThe aim of this study was to investigate disease burden, treatment patterns, and impact of delayed diagnosis on patient outcomes in Sjögren's disease (SjD) in a real-world setting in the United States.
methodsData were drawn from the Adelphi Primary Sjögren's Syndrome Disease Specific Programme, a US-based cross-sectional collaborative survey between rheumatologists and their next six consecutive consulting patients with SjD. Rheumatologists provided patients' demographic and clinical information using medical records and a patient-completed questionnaire.
resultsRheumatologists (N = 84) provided data on 511 patients with SjD. Calculated Clinical EULAR Sjögren's Syndrome Disease Activity Index (ClinESSDAI)-proxy scores (ps) indicated that patients had mild (44.2%), moderate (30.9%), or severe (24.9%) disease. Among 297 patients, 33.7% had a EULAR Sjögren's Syndrome Patient-Reported Index (ESSPRI)-ps of ≥5. Descriptive trends in patient-reported EuroQoL 5-Dimension 3-Level (EQ-5D-3L) utility, EuroQoL Visual Analog Scale (EQ-VAS), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), and Work Productivity and Activity Impairment questionnaire scores suggested worsening impairment with increasing SjD severity. Mean (±SD) time to diagnosis was 2.3 (±5.6) years. EQ-5D-3L utility (P = 0.042), EQ-VAS (P = 0.026), FACIT-F (P = 0.007) scores, and ESSPRI-ps (P = 0.001) differed significantly by duration of diagnostic delay. The odds of ClinESSDAI-ps and ESSPRI-ps ≥5 at data collection were 2.3 and 2.1 times greater, respectively, in patients diagnosed >12 versus <3 months after symptom onset.
conclusionGreater ClinESSDAI severity, longer diagnostic delays, and inefficient patient referrals were associated with worsened symptom management and poorer outcomes. Patients with moderate/severe disease who do not receive timely advanced treatment may experience greater disease burden, highlighting an unmet treatment need.
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