Primary Sjögren’s Syndrome: A Retrospective Cohort Study of Burden of Illness in Sweden

Primary Sjögren’s syndrome (pSS) is an autoimmune disease that typically affects the secretory glands that produce tears, saliva, and other secretions. Patients can experience debilitating fatigue and can also develop conditions in other parts of the body, commonly including arthritis and Raynaud’s phenomenon. This study investigated the burden and disease course of pSS in Sweden. Swedish national registry data were used to match adult patients diagnosed with pSS, with members of the Swedish general population. The use of healthcare resources and their associated costs were compared. The clinical burden of pSS during patient follow-up was explored via year-on-year occurrence and cumulative incidence of extraglandular symptoms. Employment and retirement rates were used to investigate the effect of pSS on patient productivity. A total of 8884 patients with pSS and 88,233 members of the general population were included in the study. Patients with pSS had higher use of healthcare resources and higher associated costs than members of the general population, including twice as many outpatient visits. Costs were highest in the first year after diagnosis, reducing and stabilizing over the following 7 years. Overall, 41% of patients had a healthcare encounter that included a relevant extraglandular symptom code during follow-up. Almost two-thirds of patients were diagnosed during an outpatient visit, and < 30% of diagnoses were from rheumatology departments. Patients with pSS were at a greater risk of early retirement than the general population at 5 years post-diagnosis. These results indicate that patients with pSS experience a high disease burden in Sweden.