Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA
Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA.
Lupus Sci Med. 2022 Aug;9(1). doi: 10.1136/lupus-2022-000705.
We have developed a new conceptual model to characterise the signs and symptoms of SLE: the Type 1 and 2 SLE Model. Within the original model, Type 1 SLE consists of inflammatory manifestations like arthritis, nephritis and rashes; Type 2 SLE includes symptoms of fatigue, myalgia, mood disturbance and cognitive dysfunction. Through in-depth interviews, we explored how the Type 1 and 2 SLE Model fits within the lived experience of patients with SLE, with a focus on the connection between Type 1 and Type 2 SLE symptoms.
Semistructured in-depth interviews were conducted among adult participants meeting 1997 American College of Rheumatology or Systemic Lupus International Collaborating Clinics criteria for SLE. Participants were purposefully selected for age, race, sex and nephritis history. All interviews were audio-recorded and transcribed. Data were analysed through episode profile and thematic analysis.
Through interviews with 42 patients with SLE, two patterns of Type 2 SLE emerged: Intermittent (n=18) and Persistent (n=24). Participants with Intermittent Type 2 SLE described feeling generally well when Type 1 is inactive; these participants were younger and had more internal SLE manifestations. Participants with Persistent Type 2 described always experiencing Type 2 symptoms despite inactive Type 1, although the severity may fluctuate. Participants with Persistent Type 2 SLE experienced traditional lupus symptoms of joint pain, hair loss and rash, but less often had severe organ system involvement.
By listening to the stories of our patients, we found two underlying patterns of Type 2 SLE: Intermittent Type 2 symptoms that resolve in synchrony with Type 1 inflammatory symptoms, and Persistent Type 2 symptoms that continue despite remission of Type 1 symptoms.
我们开发了一种新的概念模型来描述 SLE 的体征和症状：1 型和 2 型 SLE 模型。在原始模型中，1 型 SLE 包括关节炎、肾炎和皮疹等炎症表现；2 型 SLE 包括疲劳、肌痛、情绪障碍和认知功能障碍等症状。通过深入访谈，我们探讨了 1 型和 2 型 SLE 模型如何符合 SLE 患者的实际体验，重点关注 1 型和 2 型 SLE 症状之间的联系。
对符合 1997 年美国风湿病学会或系统性红斑狼疮国际合作临床中心 SLE 标准的成年患者进行半结构式深入访谈。根据年龄、种族、性别和肾炎病史有目的地选择参与者。所有访谈均进行录音并转录。通过情节分析和主题分析进行数据分析。
通过对 42 名 SLE 患者的访谈，出现了两种 2 型 SLE 模式：间歇性（n=18）和持续性（n=24）。间歇性 2 型 SLE 患者在 1 型无活动时感觉一般良好；这些患者年龄较小，且有更多内部 SLE 表现。持续性 2 型 SLE 患者描述尽管 1 型无活动，但始终存在 2 型症状，尽管严重程度可能波动。持续性 2 型 SLE 患者经历了关节疼痛、脱发和皮疹等传统狼疮症状，但较少发生严重的器官系统受累。
通过倾听我们患者的故事，我们发现了两种潜在的 2 型 SLE 模式：与 1 型炎症症状同步缓解的间歇性 2 型症状，以及尽管 1 型症状缓解但仍持续存在的持续性 2 型症状。
