Impact of time to diagnosis in patients with primary Sjögren's syndrome: a cross-sectional study

Primary Sjögren's syndrome is a chronic autoimmune disease with an inflammation of exocrine glands. It can be difficult to diagnose due to frequently unspecific symptoms, such as fatigue and myalgia. The aim of this study was to investigate the journey of patients prior to the diagnosis of primary Sjögren's syndrome and how this affects the patient-reported outcomes. The study included 170 patients from the outpatient clinic with an age of at least 18 years that were diagnosed with primary Sjögren's syndrome (ICD-10 M35.0) and fulfilled ACR/EULAR 2016 criteria at least 12 months before. Socio-demographic details, patient-reported outcomes and the history of diagnosis were obtained via a structured questionnaire. The average diagnostic latency for this group of patients with Sjögren's syndrome is 5.98 years, with a median of 2 years. The cohort was divided into two groups based on the median of two years: one with a longer and the other with a shorter diagnostic delay. The group with a longer diagnostic delay was in a significantly poorer general health condition and was significantly more likely to report a negative impact on the general performance. Patients with longer diagnostic delay reported significantly more physician visits and suffered significantly more frequently from vaginal dryness, gastrointestinal symptoms and breathlessness as initial symptoms. Our findings underline the importance of awareness of Sjögren's syndrome and interdisciplinary training of physicians to improve the patient related outcomes due to a reduced diagnostic latency.