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

OBJECTIVE

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.

METHODS

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.

RESULTS

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.

CONCLUSION

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.