1 型和 2 型系统性红斑狼疮模型：系统性红斑狼疮患者的观点。
The Type 1 & 2 systemic lupus erythematosus model: Perspectives of people living with systemic lupus erythematosus.
机构信息
Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
出版信息
Lupus. 2024 Mar;33(3):266-272. doi: 10.1177/09612033241228343. Epub 2024 Jan 18.
OBJECTIVE
In the new Type 1 & 2 model for systemic lupus erythematosus (SLE), Type 1 SLE represents classic inflammatory manifestations, such as arthritis, while Type 2 SLE encompasses symptoms such as pain and fatigue where the relationship to inflammation is less clear. The objective of this study was to interview individuals living with SLE to determine the content and face validity of the Type 1 & 2 SLE model.
METHODS
We conducted a qualitative study using semi-structured interviews with a purposeful sample of participants who met classification criteria for SLE. Participants were asked to describe their experiences with Type 1 & 2 SLE symptoms and treatments, and they indicated if and how their personal experiences aligned with the Type 1 & 2 SLE model. All interviews were audio-recorded and transcribed; applied thematic analysis identified the most frequent and salient themes.
RESULTS
We interviewed 42 participants with SLE. Type 2 SLE symptoms, such as pain and fatigue, were very common, with almost all participants experiencing some Type 2 symptoms at some point during their disease course. Participants described Type 1 SLE symptoms as being acute flares and life-threatening and Type 2 SLE symptoms as "everyday lupus" that affected their daily lives and were a dominant part of their SLE disease experience. Most participants stated they want their rheumatologists to discuss Type 2 symptoms during clinical appointments in order to address their full symptom experience.
CONCLUSION
We demonstrated content and face validity of the Type 1 & 2 SLE model with people living with SLE. Participants in our study largely understood the model and felt it accurately reflected their experience living with SLE. Type 2 SLE symptoms are very common in individuals with SLE and impact patients' quality of life. Using the model to address Type 2 SLE symptoms allows the rheumatologist to incorporate the patient's perspective and provide patient-centered care.
目的
在新的 1 型和 2 型系统性红斑狼疮（SLE）模型中，1 型 SLE 代表经典的炎症表现，如关节炎，而 2 型 SLE 则包括疼痛和疲劳等症状，这些症状与炎症的关系不太明确。本研究的目的是采访患有 SLE 的个体，以确定 1 型和 2 型 SLE 模型的内容和表面效度。
方法
我们采用半结构式访谈进行了一项定性研究，参与者是符合 SLE 分类标准的有目的抽样。参与者被要求描述他们的 1 型和 2 型 SLE 症状和治疗的体验，并指出他们的个人经历是否以及如何与 1 型和 2 型 SLE 模型一致。所有访谈均进行录音并转录；应用主题分析确定了最常见和最突出的主题。
结果
我们采访了 42 名患有 SLE 的参与者。疼痛和疲劳等 2 型 SLE 症状非常常见，几乎所有参与者在疾病过程中的某个阶段都经历过某种 2 型症状。参与者将 1 型 SLE 症状描述为急性发作和危及生命，而 2 型 SLE 症状则为“日常狼疮”，影响他们的日常生活，是他们 SLE 疾病体验的主要部分。大多数参与者表示，他们希望他们的风湿病医生在临床预约时讨论 2 型症状，以解决他们的全部症状体验。
结论
我们通过与患有 SLE 的人一起证明了 1 型和 2 型 SLE 模型的内容和表面效度。我们研究中的参与者对该模型有了大致的了解，并认为它准确地反映了他们与 SLE 一起生活的经历。2 型 SLE 症状在患有 SLE 的个体中非常常见，会影响患者的生活质量。使用该模型来解决 2 型 SLE 症状可以使风湿病医生纳入患者的观点，并提供以患者为中心的护理。
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