PERSIMS:医生和患者的比较 关于多发性硬化症患者生活质量的PERSIPTIVES
Inês Margarido1, Inês V Carvalho2, Cátia Oliveira3
1Neurology Department, Unidade Local de Saúde de São João, Alameda Professor Hernâni Monteiro, 4200-319 Porto, Portugal; Clinical Neurosciences and Mental Health Department, Faculty of Medicine, University of Porto, Alameda Professor Hernâni, Monteiro, 4200-319 Porto, Portugal.
概括
了解患者和医生对多发性硬化症 (MS) 和其治疗的看法,是改善生活质量的关键. 患者对疾病修饰治疗 (DMT) 的满意度显著影响了 QoL,突出了以患者为中心的护理的需要.
科学领域:
- 神经学 神经学
- 生活质量研究 研究 生命质量研究
- 患者报告的结果
背景情况:
- 多发性硬化症 (MS) 管理已取得进展,但仍然存在严重的残疾.
- 了解患者和医生的观点,了解MS对生活质量 (QoL) 的影响,对于有效的护理至关重要.
- 这项研究探讨了MS症状和治疗如何从患者和神经学家的角度影响患者的QoL.
研究的目的:
- 调查MS患者和神经病学家对MS症状,治疗疗效及其对整体QOL的影响的看法.
- 确定患者和医生的优先事项之间的差异,以改善MS中的QoL.
- 通过了解MS管理中的不同价值观,为以患者为中心的护理策略提供信息.
主要方法:
- 对成年多发性硬化患者和经验丰富的多发性硬化医生进行了横截面在线调查.
- 用经过验证的MS生活质量 (MSQOL-54) 尺度对患者的QOL进行了定量评估.
- 分析了调查数据,以比较患者和医生对MS影响和QOL优先事项的看法.
主要成果:
- 252名患者和53名医生的调查反应显示,复发和较低的身体/心理健康得分之间存在显著的关联.
- 患者对疾病修饰治疗 (DMT) 选择的满意度和参与度与更高的身体和心理健康得分相关.
- 出现了关键的差异:患者优先考虑心理健康和社会支持,而医生则专注于身体方面和工作场所的适应. 疲劳是患者关注的问题,性功能障碍是医生关注的问题.
结论:
- 患者报告的结果对于将多发性硬化症治疗计划与个体患者优先事项相协调至关重要.
- 将患者的观点纳入临床实践可以提高MS患者的QOL.
- 未来的多发性硬化症护理应强调以患者为中心的方法,解决身体和精神健康问题.
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