Diagnostic Delay in Patients with Primary Sjögren’s Syndrome: A Population-Based Cohort Study in Taiwan

Abstract

The diagnosis of primary Sjögren’s syndrome (pSS) can be challenging because the cardinal sicca syndromes may be subjective and subclinical. Diagnostic delay is common among patients with pSS. The aim of this study was to assess the time of lag between the onset of sicca symptoms and a subsequent diagnosis of pSS. We used population-based data from Taiwan’s National Health Insurance (NHI) claims directory spanning up to 6 years between 2006 and 2011. All NHI-covered patients receiving a first-time approved catastrophic illness certificate (CIC) for pSS in 2011 were included; their sicca symptoms and utilization of medical resources were then traced retrospectively over five years to 2006. The time of lag was identified by observing the onset of sicca symptoms, a diagnosis of Sjögren’s syndrome, and the related claim for CIC. A total of 1970 pSS patients were included in this study. The median time of lag between the onset of sicca symptoms and pSS diagnosis was 115 weeks (interquartile range [IQR] 27–205), and between pSS diagnosis and approval of CIC, was 6 (IQR 2–37) weeks. During the time of lag between sicca symptoms, diagnosis, and approval of a CIC for pSS, the median numbers of outpatient visits were 3 (IQR 1–8) and 3 (IQR 2–7), respectively. These numbers were higher in female and elderly groups. Patients experience a significant diagnostic delay of pSS and in the initiation of regular follow-up care. Targeted guardian programs or public health interventions are required to inform symptom interpretation and reduce delays.