系统性红斑狼的整体方法:医生是否避免解决难以治疗但高度相关的症状?
Ioannis Parodis1,2, Chris Wincup3, Zahi Touma4
1Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, and Center for Molecular Medicine (CMM), Stockholm, Sweden.
RMD open
|March 7, 2025
概括
系统性红斑狼 (SLE) 患者的生活质量不佳,早逝. 优先考虑症状管理和患者报告的结果可以改善护理和患者满意度.
科学领域:
- 风湿病学和免疫学
- 患者报告的结果
- 系统性红斑狼 (SLE) 管理
背景情况:
- 系统性红斑狼 (SLE) 显著损害了患者的与健康相关的生活质量 (hrQoL) 和生存率.
- 疾病的复杂性,治疗副作用和未解决的中枢神经系统症状,如疲劳和认知功能障碍,妨碍了有效的管理.
- 传统的基于证据的方法往往忽视了整体护理和以患者为中心的需求.
研究的目的:
- 突出SLE管理的持续挑战,尽管有治疗方面的进步.
- 强调患者报告结果 (PROs) 在改善hrQoL.L.方面发挥的关键作用.
- 倡导转向以患者为中心的护理和SLE的综合性症状管理.
主要方法:
- 关于SLE管理和患者结果的当前文献的综述.
- 分析疾病严重程度和治疗副作用对hrQoL的影响.
- 探索解决SLE神经精神病症状的挑战.
- 讨论转向以患者为中心的护理和PROs.的范式转变.
主要成果:
- 在SLE中实现缓解为hrQoL和死亡率提供了显著的好处,但仍然具有挑战性.
- 神经精神症状 (疲劳,疼痛,脑雾) 由于有限的指导和工具,经常被忽视.
- 对PROs的认可已经开始向更加以患者为中心的护理模式迈进.
- 优先考虑症状管理可以提高患者的坚持,满意度和整体生活经验.
结论:
- 专注于PRO和综合性症状管理的以患者为中心的方法对于改善SLE患者的生活至关重要.
- 解决SLE的复杂性需要一个整体的战略,补充基于证据的医学.
- 需要加强培训和工具,以有效地管理SLE的多样化和经常使人衰弱的症状,特别是影响中枢神经系统的症状.
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