在线评估生物丁酶缺乏信息的可读性和可理解性
1Department of Pediatrics, Division of Inherited Metabolic Disease and Nutrition, Dr Lutfi Kirdar City Hospital, Istanbul, Turkey. eceoge@gmail.com.
Journal of community genetics
|November 18, 2025
概括
关于生物酶缺乏的在线资源往往无法达到健康素养标准,难以阅读的材料提供有限的实际益处. 提高清晰度和可操作性对于管理这种新生儿查条件的父母和照顾者来说至关重要.
科学领域:
- 生物化学和遗传学 生物化学和遗传学
- 公共卫生和健康素养 公共卫生和健康素养
- 医疗信息传播 医疗信息传播
背景情况:
- 生物丁酶缺乏症是一种通过新生儿查计划识别的代谢障碍.
- 有效的患者教育材料对于理解和管理这种情况至关重要.
- 评估在线资源的健康素养对于公共卫生沟通至关重要.
研究的目的:
- 评估关于生物丁酶缺乏症的在线资源的可读性和可理解性.
- 确定现有的在线材料是否符合已确定的健康素养标准.
- 确定影响生物丁酶缺乏患者信息质量和有用性的因素.
主要方法:
- 在谷歌搜索"生物酶缺乏症"以识别50份在线文档.
- 分析了21份文件,根据域名扩展,将它们分类为非营利性或私有.
- 使用Readable.io (Flesch阅读方便,Flesch-Kincaid等级水平) 评估可读性,并使用患者教育材料评估工具 (PEMAT) 评估可理解性/可操作性.
主要成果:
- 与非营利性文章相比,私人在线文章的Flesch-Kincaid等级水平得分 (表明阅读难度更高) 显著更高 (13.9对10.7).
- 在私人和非营利性文章之间的PEMAT理解分数中没有发现显著差异 (52.0与42.3).
- 具有较低可读性水平的文章显示可操作性得分明显降低,这表明文本复杂性和实际应用之间存在相关性.
结论:
- 大多数关于生物酶缺乏的在线资源不符合推的健康素养标准.
- 难以阅读的材料对父母和照顾者来说不太有用和有益.
- 提高患者信息的清晰度和可操作性对于新生儿查计划中发现的疾病至关重要.
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