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干燥综合征发病患者回忆的混合方法研究-基于患者视角

Patients' recollection about the onset of Sjögren's disease - a mixed methods study on the patients' perspective.

机构信息

Department of Rheumatology & Immunology, Medical University Graz, Graz, Austria.

Division of Immunology & Pathophysiology, Medical University Graz, Graz, Austria.

出版信息

Arthritis Res Ther. 2024 Sep 28;26(1):169. doi: 10.1186/s13075-024-03404-8.

DOI:10.1186/s13075-024-03404-8
PMID:39342382
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11438132/
Abstract

BACKGROUND

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.

METHODS

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.

RESULTS

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.

CONCLUSIONS

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.

摘要

背景

关于干燥综合征(SjD)发病时的症状知之甚少,也不清楚 SjD 是否从可与其他原因(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。第二个目的是在代表性队列中验证和量化这些方面。

方法

所有 SjD 患者均符合 EULAR/ACR 2016 分类标准。在研究的第一部分,连续招募 SjD 患者进行个体半结构化访谈。所有访谈均进行录音并逐字转录,并进行归纳主题数据分析。在第二部分,将定性分析中确定的方面分为十个项目检查表。

结果

共有 134 名患者参与了研究。31 名 SjD 患者完成了定性部分。患者对 SjD 发病和首发症状的体验主要有以下几个方面:(1)“典型” SjD 症状(疲劳、疼痛、干燥)(2)腮腺和/或淋巴结初始肿胀后出现干燥症状,(3)在 SjD 症状出现前经历激素转变或感染。在研究的第二部分,在 103 名 SjD 患者的独立队列中验证了之前确定的主要方面。诊断前的主要症状是干燥(n=77,74.8%),伴游走性关节痛(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。

结论

我们描述了患者对 SjD 发病的回忆。提高医生和公众对所确定症状的认识,可能有助于 SjD 的早期诊断。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d356/11438132/79c90f2433a0/13075_2024_3404_Figc_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d356/11438132/ea1587e02ef1/13075_2024_3404_Figa_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d356/11438132/13703fec3a6c/13075_2024_3404_Figb_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d356/11438132/79c90f2433a0/13075_2024_3404_Figc_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d356/11438132/ea1587e02ef1/13075_2024_3404_Figa_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d356/11438132/13703fec3a6c/13075_2024_3404_Figb_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d356/11438132/79c90f2433a0/13075_2024_3404_Figc_HTML.jpg

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本文引用的文献

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