对急性髓性白血病的在线患者教育材料的评估
Jessica M Weiss1, Yasmeen Mahayni2, Amir S Steinberg3
1New York Medical College, Valhalla, NY, USA. Jweiss11@student.nymc.edu.
概括
在线急性髓性白血病 (AML) 的资源大多是可以理解的,但缺乏可行的指导. 改进这些患者教育网站可以使个人能够管理他们的AML护理.
科学领域:
- 在瘤学瘤学.
- 医疗信息学 医疗信息学
- 患者教育 患者教育
背景情况:
- 患者越来越多地在网上寻找健康信息,特别是在急性髓性白血病 (AML) 等复杂诊断方面.
- 评估在线患者教育材料的质量对于有效的疾病管理至关重要.
研究的目的:
- 评估美国急性髓性白血病 (AML) 面向患者的网站的可理解性和可操作性.
- 确定在线反洗钱教育内容的改进领域,以更好地支持患者参与和自我管理.
主要方法:
- 一个系统的搜索确定了14个面向患者的AML网站.
- 患者教育材料评估工具 (PEMAT) 被两位独立审查员使用来评估网站的可理解性和可操作性.
- 网站根据来源进行分类:政府,公共/私营公司,患者倡导团体,专业协会和癌症中心.
主要成果:
- 网站的平均可理解性得分为86% (范围为77%-100%),其中政府网站得分最高,私营/公共公司得分最低.
- 平均可操作性得分为63% (范围为33%-100%),患者倡导团体得分最高,癌症中心得分最低.
- 虽然通常可以理解,但大多数网站缺乏促使患者采取行动的内容,例如为医生准备问题或寻求支持资源.
结论:
- 在线反洗钱教育材料在很大程度上是可以理解的,但需要提高可操作性.
- 通过诸如内容摘要,视觉辅助工具,计划器和检查清单等工具来改进在线资源,可以在AML旅程中赋予患者权力.
- 有一个重要的机会来优化数字健康信息,以促进更好的患者理解和积极参与疾病管理.
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