Huang Yu-Tung, Lu Tsung-Hsueh, Chou Pi-Ling, Weng Meng-Yu
Center for Big Data Analytics and Statistics, Chang Gung Memorial Hospital, Linkou, Taoyuan 333, Taiwan.
Institute of Public Health, College of Medicine, National Cheng Kung University, Tainan 701, Taiwan.
Healthcare (Basel). 2021 Mar 23;9(3):363. doi: 10.3390/healthcare9030363.
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.
原发性干燥综合征（pSS）的诊断颇具挑战性，因为主要的干燥症状可能较为主观且处于亚临床状态。诊断延迟在pSS患者中很常见。本研究的目的是评估干燥症状出现至随后诊断为pSS之间的时间间隔。我们使用了来自台湾国民健康保险（NHI）理赔目录的基于人群的数据，时间跨度为2006年至2011年的6年。纳入了2011年所有首次获得pSS重大伤病证明（CIC）批准的NHI参保患者；然后对他们的干燥症状和医疗资源利用情况进行了为期五年的追溯，直至2006年。通过观察干燥症状的出现、干燥综合征的诊断以及相关的CIC理赔来确定时间间隔。本研究共纳入了1970例pSS患者。干燥症状出现至pSS诊断之间的中位时间间隔为115周（四分位间距[IQR]27 - 205），pSS诊断至CIC批准之间的中位时间间隔为6周（IQR 2 - 37）。在干燥症状出现、诊断以及pSS的CIC批准之间的时间间隔内，门诊就诊的中位次数分别为3次（IQR 1 - 8）和3次（IQR 2 - 7）。女性和老年组的这些次数更高。患者在pSS诊断和开始定期随访护理方面经历了显著的延迟。需要有针对性的监护项目或公共卫生干预措施来告知症状解读并减少延迟。
