对自主管理结果测量工具的内容有效性进行系统审查 多发性硬化症年轻人过渡到成年人护理
Katherine M Sawicka1, Yvonne K Lee2, Benjamin Traubici2
1Child Health Evaluative Sciences Program, SickKids Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada; Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada; Division of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
概括
目前没有任何自我管理工具足够支持从儿科到成人多发性硬化症 (MS) 护理的过渡. 现有的针对成人和青少年的措施对于这一重症监护阶段缺乏必要的内容有效性.
科学领域:
- 神经学 神经学
- 康复医学 康复医学 康复医学
- 医疗保健服务研究 医疗服务研究
背景情况:
- 有效的自我管理对于从多发性硬化症 (MS) 的儿科到成人护理过渡的个人至关重要.
- 现有的自我管理措施需要在MS过渡期内对其适用性进行评估.
- 当前措施中的差距可能会阻碍患者成功适应成人多发性硬化症护理.
研究的目的:
- 确定一个合适的自我管理措施,从儿科到成人多发性硬化症 (MS) 护理的过渡.
- 通过使用既定的标准,评估现有的自我管理措施的内容有效性.
- 确定当前的措施是否充分满足MS年轻成年人在护理过渡期间的多方面的需求.
主要方法:
- 在多个数据库中进行了系统的文献搜索,截至2025年3月27日.
- 确定措施的内容有效性是使用基于COnsensus的健康测量仪器选择标准 (COSMIN) 清单进行评估的.
- 一种探索性内容链接方法将测量内容与先前关于MS青年自我管理的定性发现进行了比较.
主要成果:
- 确定了16个成人MS特异性和12个青少年通用慢性疾病措施.
- 根据Cosmin的评估,没有一项确定的措施符合足够的内容有效性标准.
- 成人MS措施缺乏关键生活管理主题的覆盖;青年措施错过了MS特定的自我管理需求.
结论:
- 目前的自我管理措施不足以支持儿科到成人多发性硬化症护理的过渡.
- 现有措施的重大修改是必要的,以解决发现的内容缺口.
- 未来的发展应该专注于为MS过渡的独特挑战创建定制的自我管理工具.
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