Little is known about the symptoms at the onset of Sjögren’s Disease (SjD) and it is unclear whether SjD starts with characteristic symptoms that could be differentiated from dryness of other origin (sicca syndrome). The aim of this study was to investigate patients’ recollection of initial events and first symptoms of SjD. The second aim was to verify and quantify these aspects in a representative cohort. All SjD patients fulfilled the EULAR/ACR 2016 classification criteria. In the first part of the study, consecutive SjD patients were recruited for individual, semi-structured interviews. All interviews were audio-recorded and transcribed verbatim, and an inductive thematic data analysis was performed. In the second part, the identified aspects of the qualitative analysis were grouped into a checklist with ten items. One-hundred and thirty-four patients participated in the study. 31 SjD patients completed the qualitative part. Major aspects emerged of how patients experienced the beginning and first symptoms of SjD: (1) “classic” SjD symptoms (fatigue, pain, dryness) (2), sicca symptoms started after initial swelling of parotid and/or lymph nodes (3), after hormonal transition or infections before the onset of SjD symptoms. In the second part of the study, the previous identified major aspects were verified in an independent cohort of 103 SjD patients. The main symptom before diagnosis was dryness (n = 77, 74.8%) with migratory joint pain (n = 51, 49.5%) and fatigue (n = 47, 45.6%). In 38.8% (n = 40), patients reported a swelling/inflammation of the parotid gland at the onset of disease. We describe patients’ recollection of the onset of SjD. Raising awareness of the symptoms identified among physicians and among the general public may allow earlier diagnosis of SjD.

中文翻译：

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患者对干燥病发病的回忆——基于患者视角的混合方法研究


我们对干燥病 (SjD) 发病时的症状知之甚少，也不清楚干燥病是否以可与其他原因的干燥（干燥综合征）区分的特征性症状开始。本研究的目的是调查患者对 SjD 初始事件和首发症状的回忆。第二个目标是在代表性队列中验证和量化这些方面。所有 SjD 患者均符合 EULAR/ACR 2016 分类标准。在研究的第一部分中，连续招募 SjD 患者进行个人、半结构化访谈。所有访谈均进行录音并逐字转录，并进行归纳性主题数据分析。在第二部分中，定性分析的已确定方面被分组为包含十项的清单。一百三十四名患者参与了这项研究。 31 名 SjD 患者完成了定性部分。患者如何经历 SjD 的开始和最初症状的主要方面是：(1) “经典”SjD 症状（疲劳、疼痛、干燥）(2)、腮腺和/或淋巴结最初肿胀后开始出现干燥症状 (3) 、荷尔蒙转变后或感染后，SjD 症状出现前。在研究的第二部分中，之前确定的主要方面在 103 名 SjD 患者的独立队列中得到了验证。诊断前的主要症状是干燥（n = 77，74.8%），伴有游走性关节痛（n = 51，49.5%）和疲劳（n = 47，45.6%）。 38.8%（n = 40）的患者在发病时报告腮腺肿胀/炎症。我们描述了患者对 SjD 发作的回忆。提高医生和公众对所发现症状的认识可能有助于更早诊断 SjD。