系统性红斑狼爆发的患者和医生的观点:一种定性研究
Jennifer L Rogers1, Megan E B Clowse1, Kevin McKenna2
1J.L. Rogers, MD, M.E.B. Clowse, MD, MPH, K. Sun, MD, MS, L.G. Criscione-Schreiber, MD, MEd, R.E. Sadun, MD, PhD, M. Maheswaranathan, MD, D. Burshell, MPH, J. Doss, MD, MPH, A.M. Eudy, PhD, Division of Rheumatology and Immunology, Duke University School of Medicine.
The Journal of rheumatology
|December 15, 2023
概括
医生和患有全身性红斑狼 (SLE) 的患者对爆发的描述不同. 患者专注于疲劳和疼痛等症状,而医生则强调临床疾病活动,表明当前爆发定义中的潜在差距.
科学领域:
- 类风湿病学 类风湿病学
- 患者报告的结果
- 定性研究是指质量研究.
背景情况:
- 系统性红斑狼 (SLE) 爆发显著影响患者的损害累积和生活质量.
- 现有的SLE爆发的定义可能无法完全捕捉患者的体验.
研究的目的:
- 探索和比较患者和医生对系统性红斑狼 (SLE) 爆发的看法.
- 调查患者和医疗保健提供者之间对SLE爆发的理解和描述的潜在矛盾.
主要方法:
- 使用深度采访进行的定性描述性研究.
- 针对SLE患者和执业的风湿病学家进行有目的的抽样.
- 应用对转录的采访进行主题分析.
主要成果:
- 患者主要通过关节疼痛,疲劳和持续数天的皮肤问题等症状描述SLE爆发.
- 很少有患者将客观标志或实验室测量纳入他们的爆发描述.
- 医生在很大程度上通过增加SLE疾病活动来定义爆发,其中许多需要客观发现,尽管有些包括患者报告的症状.
结论:
- 患者和医生如何描述和定义SLE爆发存在显著差异.
- 目前关于SLE爆发的定义可能不足以涵盖患者报告的经验和临床指标.
- 需要进一步的研究,以了解以患者为中心的发作体验,并将其纳入临床评估.
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