患者对斯约恩氏病发病过程的回忆--关于患者观点的混合方法研究

IF 4.9 2区 医学 Q1 Medicine Arthritis Research & Therapy Pub Date : 2024-09-28 DOI:10.1186/s13075-024-03404-8
Angelika Lackner, Barbara Dreo, Josef Hermann, Sabine Zenz, Johannes Fessler, Jens Thiel, Martin Helmut Stradner
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引用次数: 0

摘要

人们对斯约格伦病(SjD)发病时的症状知之甚少,也不清楚斯约格伦病发病时是否具有可与其他原因引起的干燥症(干燥综合征)区分开来的特征性症状。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。第二个目的是在具有代表性的人群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,我们招募了连续的 SjD 患者进行个人半结构化访谈。所有访谈均进行了录音和逐字记录,并进行了归纳式专题数据分析。第二部分是将定性分析中发现的问题归纳成一个包含十个项目的核对表。134 名患者参与了研究。31 名 SjD 患者完成了定性分析部分。患者如何经历 SjD 的开始和最初症状的主要方面包括:(1) "典型 "SjD 症状(疲劳、疼痛、干燥)(2)、腮腺和/或淋巴结最初肿大后开始出现的 SjD 症状(3)、SjD 症状出现前的荷尔蒙转换或感染后的 SjD 症状。在研究的第二部分,103 名 SjD 患者组成的独立队列对之前确定的主要方面进行了验证。确诊前的主要症状是干燥(77 人,占 74.8%),伴有移行性关节疼痛(51 人,占 49.5%)和疲劳(47 人,占 45.6%)。38.8%的患者(n = 40)称发病时腮腺肿胀/发炎。我们描述了患者对 SjD 发病的回忆。提高医生和公众对所发现症状的认识可能会使 SjD 得到更早的诊断。
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Patients’ recollection about the onset of Sjögren’s disease – a mixed methods study on the patients’ perspective
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.
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来源期刊
CiteScore
8.60
自引率
2.00%
发文量
261
审稿时长
14 weeks
期刊介绍: Established in 1999, Arthritis Research and Therapy is an international, open access, peer-reviewed journal, publishing original articles in the area of musculoskeletal research and therapy as well as, reviews, commentaries and reports. A major focus of the journal is on the immunologic processes leading to inflammation, damage and repair as they relate to autoimmune rheumatic and musculoskeletal conditions, and which inform the translation of this knowledge into advances in clinical care. Original basic, translational and clinical research is considered for publication along with results of early and late phase therapeutic trials, especially as they pertain to the underpinning science that informs clinical observations in interventional studies.
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