Abstract：
Anifrolumab is a new therapeutic approach for individuals with systemic lupus erythematosus (SLE) directed at blocking the type 1 interferon pathway. Despite the expanding body of literature on Anifrolumab, an essential aspect remains absent: the subjective patient experience of treatment effects and implications on patients\' health-related quality of life (HRQoL). The present study aimed to fill this void by elucidating the nuanced perspectives of SLE patients receiving Anifrolumab treatment by conducting qualitative in-depth interviews (IDIs). SLE patients at Aarhus University Hospital who had received at least three infusions of Anifrolumab were approached for inclusion in the study, which comprised two main elements: (1) qualitative IDIs and (2) collection of patient data from electronic medical records (EMRs). The IDIs were semi-structured and based on a discussion guide that included open-ended and close-ended questions. Verbatim transcripts were coded and analysed using qualitative software to understand concepts important to patients and to understand patients\' own experiences before and after Anifrolumab therapy. A clinical chart review was conducted using EMR data at baseline, 3 months, and 6 months after Anifrolumab initiation. IDIs were completed with 14 patients, and EMR data was collected from 16 patients (treatment days range: 62-474). Of the 23 symptoms spontaneously reported by patients prior to Anifrolumab treatment, fatigue, joint pain, sun sensitivity, joint stiffness, skin rashes, and hair loss were the most common. Most symptoms improved, and none worsened during treatment. Patients reported significant impacts of disease on daily life before treatment: day-to-day activities, social life, emotional aspects, physical activity, concentration/memory, work/employment, and family/romantic relationships. Patients reported improvements in all aspects after treatment but were still impacted. From the EMR data, we observed a fall in disease activity after treatment initiation with a concomitant reduction in the use of corticosteroids. This study provides valuable insights into the subjective experiences of SLE patients treated with Anifrolumab, and the findings collectively contribute to a comprehensive understanding of the treatment\'s efficacy from the patients\' perspective and its tangible effects on both subjective and objective parameters in SLE patients.
摘要：
Anifrolumab是针对系统性红斑狼疮（SLE）患者的一种新的治疗方法，旨在阻断1型干扰素途径。尽管关于Anifrolumab的文献越来越多，一个重要的方面仍然不存在:患者对治疗效果的主观体验以及对患者健康相关生活质量(HRQoL)的影响。本研究旨在通过进行定性深入访谈（IDIs）来阐明接受Anifroummab治疗的SLE患者的细微差别观点，以填补这一空白。奥胡斯大学医院的SLE患者接受了至少三次Anifrolummab的输注，并被纳入研究。其中包括两个主要要素：（1）定性IDI和（2）从电子病历（EMR）收集患者数据。IDI是半结构化的，基于讨论指南，其中包括开放式和封闭式问题。使用定性软件对逐字记录进行编码和分析，以了解对患者重要的概念，并了解患者在Anifrolummab治疗前后的经验。使用基线EMR数据进行临床图表审查，3个月,Anifrolumab启动后6个月。IDI在14名患者中完成，收集16例患者的EMR数据（治疗天数范围：62-474）。在Anifroummab治疗前患者自发报告的23种症状中，疲劳,关节痛,对太阳的敏感度,接头刚度,皮疹,脱发是最常见的。大多数症状都有所改善，治疗期间没有恶化。患者在治疗前报告疾病对日常生活的重大影响：日常活动，社会生活,情感方面，身体活动,浓度/记忆，工作/就业，和家庭/浪漫关系。患者报告治疗后各方面均有所改善，但仍受到影响。从EMR数据来看,我们观察到治疗开始后疾病活动度下降,同时皮质类固醇的使用减少.这项研究为使用Anifroummab治疗的SLE患者的主观体验提供了有价值的见解，这些发现有助于从患者的角度全面了解治疗效果及其对SLE患者主观和客观参数的实际影响。
