Department of Rheumatology, Aarhus University Hospital, Aarhus, Denmark.
Biomedicine, Aarhus University, Aarhus, Denmark.
Lupus. 2024 Aug;33(9):962-973. doi: 10.1177/09612033241261746. Epub 2024 Jun 20.
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.
阿尼福单抗是一种针对 1 型干扰素途径的新型治疗方法,用于治疗系统性红斑狼疮(SLE)患者。尽管关于阿尼福单抗的文献不断增加,但仍存在一个重要方面的空白:接受阿尼福单抗治疗的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。本研究旨在通过对接受阿尼福单抗治疗的 SLE 患者进行深入的定性访谈(IDIs),阐明 SLE 患者对治疗效果的细微看法,以填补这一空白。我们邀请了在奥胡斯大学医院接受至少三次阿尼福单抗输注的 SLE 患者参加这项研究,该研究包括两个主要部分:(1)定性 IDIs 和(2)从电子病历(EMR)中收集患者数据。IDIs 采用半结构式,基于包括开放式和封闭式问题的讨论指南。逐字记录被编码并使用定性软件进行分析,以了解对患者重要的概念,并了解患者在接受阿尼福单抗治疗前后的自身体验。在开始使用阿尼福单抗后 3 个月和 6 个月,使用 EMR 数据进行临床图表回顾。完成了 14 名患者的 IDIs,并从 16 名患者(治疗天数范围:62-474)中收集了 EMR 数据。在接受阿尼福单抗治疗之前,患者自发报告的 23 种症状中,疲劳、关节疼痛、阳光敏感、关节僵硬、皮疹和脱发最为常见。在治疗过程中,大多数症状得到改善,没有症状恶化。患者报告称,在接受治疗之前,疾病对日常生活有重大影响:日常活动、社交生活、情绪方面、体育活动、注意力/记忆力、工作/就业以及家庭/浪漫关系。患者报告在治疗后所有方面都有所改善,但仍受到影响。从 EMR 数据中,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。这项研究提供了 SLE 患者接受阿尼福单抗治疗的主观体验的宝贵见解,研究结果共同从患者角度全面了解了治疗的疗效及其对 SLE 患者主观和客观参数的实际影响。