Patient Journey, Disease Burden, Treatment Patterns, and the Impact of Delayed Diagnosis Among Patients With Sjögren's Disease: A Real-World US Survey.

Authors

Anjana Lalla, Antton Egana, Jack Milligan, Nicola Massey, James Haughton

Published in

ACR open rheumatology. Volume 8. Issue 10. Pages e90143.

Abstract

The 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.
Data 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.
Rheumatologists (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.
Greater 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.

PMID:
42786636
Bibliographic data and abstract were imported from PubMed on 25 Sep 2026.

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