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分析Krabbe疾病在线资源的可访问性和适用性

Megan Zieber¹, W Curtis Weaver², Elizabeth Felter³

¹Human Genetics Department, University of Pittsburgh School of Public Health, Pittsburgh, PA, USA. mez89@pitt.edu.

Journal of community genetics

|November 21, 2025

概括

关于克拉贝病 (KD) 的在线资源往往难以理解,缺乏清晰的语言和可操作的步骤,帮助家庭应对这种罕见疾病. 需要在图形和交互元素方面进行改进,以改善患者教育.

科学领域:

遗传学是一个遗传学.
公共卫生公共卫生
医疗通信医疗通信

背景情况:

像克拉贝病 (KD) 这样的罕见疾病给公共卫生带来了重大挑战.
健康素养差异影响患者管理和预后.
在线患者教育材料 (PEMs) 对寻求有关诊断和护理信息的家长至关重要.

研究的目的:

评估Krabbe疾病在线资源的可访问性和适用性.
确定KD的患者教育材料需要改进的领域.
为增强在线KD信息资源提供建议.

主要方法:

对以患者为中心的KD资源进行了谷歌搜索.
将资源内容与基本信息标准进行比较.
通过使用Flesch-Kincaid (FK) 和SMOG.G评估可读性.
通过材料适用性评估 (SAM) 和患者教育材料评估工具 (PEMAT) 评估适用性.

主要成果:

所有资源都描述了KD,症状和遗传学;很少有人讨论遗传咨询或下一步.
大多数资源超过了推的可读性水平 (平均FK:10.6,SMOG:12.5).
虽然SAM评为"充足",但PEMAT评分显示由于有限的图形和互动性,可理解性 (55.1%-94.1%) 和可操作性 (0%-83.3%) 有问题.
没有一个单一的资源符合所有基本标准.

结论:

在线KD资源通常是可导航的,但缺乏清晰的,共同的语言和适当的图形.
互动性和诊断后具体的行动步骤往往缺失.
未来的资源开发应该优先考虑明确的术语,视觉辅助和可操作的指导,为受Krabbe疾病影响的家庭提供指导.

关键词:

可访问性可访问性提高健康素养提高健康素养在 Krabbe Krabbe 里面,我们可以看到.可读性可读性适合性适合性的

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