多发性硬化症患者的疾病修饰治疗的经验 - - 定性研究
Kristina Gottberg1, Marie Kierkegaard2,3, Birgitta Jakobsson Larsson4,5
1Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden. kristina.gottberg@ki.se.
BMC neurology
|December 10, 2025
概括
多发性硬化症 (MS) 患者希望针对疾病修饰治疗 (DMT) 提供个性化的反和护理计划. 了解患者对DMT的体验对于改善日常生活管理至关重要.
科学领域:
- 神经学 神经学
- 患者体验研究 研究研究
- 医疗保健干预措施 医疗保健干预措施
背景情况:
- 对多发性硬化症 (MS) 的疾病修饰治疗 (DMT) 进行了广泛的研究,重点是疗效和副作用.
- 有限的研究探讨了患者在日常生活中使用DMT的经验.
研究的目的:
- 调查和描述接受多发性硬化治疗的患者的日常生活经历.
- 了解患者对DMT管理及其影响的看法.
主要方法:
- 使用半结构面试进行定性研究设计.
- 采访与8名多发性硬化症患者进行了采访,他们接受了各种DMT.
- 使用定性内容分析分析的数据.
主要成果:
- 出现了三个关键主题:与以前的治疗相比,满足预期,持续需要治疗和副作用的管理,以及希望得到MS护理团队的个性化反.
- 患者表示希望有量身定制的治疗计划和程序.
- 突出了MS护理团队的专业专业知识和知识的重要性.
结论:
- 患者的经验强调了在MS护理中需要以人为中心的干预措施.
- 未来的干预措施应纳入患者的偏好,社会支持和医疗保健专业人员的专业知识.
- 这些发现可以为开发患者报告的日常生活与MS DMTs的结果指标提供信息.
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