罕见疾病101:一个在线资源,在一个简短的课程中教授超过7000种罕见疾病
Thomas Frederick Dunne1, Daniel Jeffries2, Lucy Mckay2
1Alder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool, L12 2AP, UK. thomas.dunne@live.com.
Orphanet journal of rare diseases
|July 22, 2024
概括
医疗保健专业人员需要更好的罕见病教育. 一个新的在线课程,罕见疾病101,提供一种疾病不可知的方法,专注于罕见病患者面临的常见挑战.
科学领域:
- 医学教育 医学教育
- 罕见疾病 罕见疾病
- 医疗保健专业培训 医疗保健专业培训
背景情况:
- 英国有数百万人患有罕见疾病,面临诊断延迟和分散的护理.
- 目前的医学教育不足以满足罕见病社区的需求.
- 英国罕见病框架优先提高医疗保健专业人员的认识.
研究的目的:
- 解决医学教育关于罕见疾病的差距.
- 为医疗保健专业人员开发和评估一种疾病不可知性培训计划.
- 改善对罕见疾病的理解和管理.
主要方法:
- 由Medics4RareDiseases (M4RD) 开发的在线课程"罕见疾病101".
- 使用一个免费,可访问的学习管理系统,提供交互式课程和讨论板.
- 文献搜索以确定现有的罕见病教育资源.
主要成果:
- "罕见疾病101"在29个月内有942名注册用户和204名完成者.
- 33名受访者的早期反极为积极,76%的受访者将课程评为优秀.
- 该课程展示了为临床医生和患者提供广泛的罕见病教育的好处.
结论:
- 疾病不可知性培训对于解决大量罕见病患者群体未得到满足的需求至关重要.
- "罕见疾病101"为影响患者结果的教育挑战提供了切实可行的解决方案.
- 需要进一步评估才能充分评估该计划的影响,但初步结果是有希望的.
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