多发性硬化症的预先护理计划 (ConCure-SM):一个多中心单臂试点和可行性研究
Alessandra Solari1, Ludovica De Panfilis2,3, Roberta Martina Zagarella4
1Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.
PloS one
|October 7, 2025
概括
对于患有渐进性多发性硬化症 (PwPMS) 的人来说,提前护理计划 (ACP) 是一个挑战. 一项结构化干预显示出潜力,但需要改进,以解决PwPMS和其他重大 (SO) 需求.
科学领域:
- 神经学 神经学
- 抚慰性护理是一种缓解性护理.
- 医疗保健服务研究 医疗服务研究
背景情况:
- 预先护理计划 (ACP) 在渐进性多发性硬化症 (PwPMS) 中未得到充分利用.
- 在ConCure-SM项目中,为PwPMS开发了一种结构化的ACP干预.
- 这项干预包括临床医师培训和患者手册.
研究的目的:
- 评估PwPMS的结构化ACP干预措施的有效性和可行性.
- 评估患者和临床医生的经验与ACP过程.
主要方法:
- 在意大利6个中心进行了单臂试点/可行性试验.
- 参与者包括PwPMS,他们的重要其他人 (SO) 和临床医生.
- 测量结果包括ACP文件完成,安全性,可行性,焦虑,抑郁,生活质量和护理人员负担,使用混合方法.
主要成果:
- 包括19个PwPMS;11个 (58%) 完成了预先护理计划文件.
- 不良事件包括焦虑增加,HADS-焦虑和MSQOL-29心理健康评分恶化.
- 定性数据揭示了非洲和非洲国家和地区重要的主题,情感影响,准备和挑战.
结论:
- 干预帮助神经科医生通过ACP指导PwPMS.
- 高拒绝率表明需要加强干预,以解决PwPMS和SO的需求.
- 进一步的研究应侧重于优化对这一群体的ACP服务.
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