一个专家患者计划,以改善多发性硬化症患者的赋权和生活质量:多中心前后干预研究的协议
Miguel Angel Robles-Sanchez1,2,3, Paloma Amil-Bujan4, Cristina Bosch-Farré1
1Grup de recerca Salut i Atenció Sanitaria, University of Girona, Girona, Spain.
Frontiers in neurology
|June 5, 2023
概括
多发性硬化症 (MS) 专家患者计划加泰罗尼亚TM通过远程同行领导的会议改善了生活质量和自我管理技能. 该计划赋予MS患者权力,增强他们的健康自主性和福祉.
科学领域:
- 神经学 神经学
- 公共卫生 公共卫生
- 卫生教育卫生教育教育
背景情况:
- 多发性硬化症 (MS) 是一种进展性神经疾病,严重影响患者的生活质量 (QoL).
- 有效的健康干预措施对于管理多发性硬化和减轻QOL损伤至关重要.
- 专家患者计划 (EPP) 利用同行学习来促进与健康相关的赋权.
研究的目的:
- 评估专家患者计划加泰罗尼亚TM对MS (EPPC-MS) 对参与者的QOL的影响.
- 评估该计划中MS患者疾病相关知识和自我管理技能的变化.
- 为了确定护士协调的,同行领导的远程干预对MS的有效性.
主要方法:
- 一项干预前后的多中心临床研究,涉及7个中心的144名复发性或进展性MS参与者.
- 该干预包括9个每周的远程,同行主导的会议,由经过培训的MS患者提供便利.
- 干预前,干预后,干预后6个月和12个月的QoL,知识,自我管理和其他与健康相关的变量被测量.
主要成果:
- 该研究旨在分析干预前后的数据,以评估该计划的影响.
- 数据收集包括QoL,情绪影响,激活,知识,疲劳,生活方式,医疗保健利用和程序经验.
- 随访变量包括新的复发和治疗变化,会议出席率也被记录.
结论:
- 远程,由同行领导的EPP可以赋予患有MS等慢性疾病的个人权力.
- EPPC-MS旨在增强多发性硬化症患者的自主性和改善多发性硬化症患者的生活质量.
- 远程交付提供了实际的好处,包括改善工作与生活的平衡和降低成本.
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