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儿童脂肪酸代谢先天性疾病热门网络搜索内容的可读性分析

Analysis of readability of the top web searches for pediatric inborn errors of fatty acid metabolism.

作者信息

Sawyer Katelyn, Miller William, Popp Courtney, Strege Chloe, Eide Cindy, Tolar Jakub

机构信息

Department of Pediatrics, Division of Blood and Marrow Transplantation and Cellular Therapies, University of Minnesota, Minneapolis, MN, United States of America.

University of Minnesota Medical School, Minneapolis, MN, United States of America.

出版信息

Mol Genet Metab Rep. 2025 Jan 25;42:101195. doi: 10.1016/j.ymgmr.2025.101195. eCollection 2025 Mar.

Abstract

BACKGROUND

Disorders of fatty acid oxidation (FAOD) are estimated to account for around 1 in 10,000 live births, and with modern newborn screens, these conditions are often identified in childhood. However, not all parents will receive regular medical follow-up, and varying levels of parental health literacy can influence their reliance on online resources for information. Therefore, assessing the readability of online materials is critical to ensuring accessible and comprehensible patient education. Understanding the readability landscape informs our efforts to improve the quality of online resources and to support parents and patients in navigating the diagnosis of an FAOD.

OBJECTIVE

Our goal was to evaluate the readability of public facing online materials concerning the 10 most common disorders of fatty acid oxidation, with consideration given to the recommended reading levels by the National Institutes of Health (NIH) and the American Medical Association (AMA).

METHODS

Using Flesch-Kincaid, Coleman-Liau, and SMOG readability indices, we analyzed the top 25 internet search results for each disorder. Excluding empty or paywalled content, 232 publicly accessible materials were assessed.

RESULTS

Mean readability ranged from 11.64 to 12.85, indicating generally higher complexity than recommended. Only 15.5 % of materials met NIH's 8th grade reading level guideline, and 3.9 % met AMA's 6th grade level. Variability existed between disorders, with percentages meeting guidelines ranging from 0 % to 25 % for NIH and 0 % to 8.3 % for AMA.

CONCLUSION

Ensuring readability of online resources for rare disorders of fatty acid oxidation is crucial, particularly given the prevalence of childhood diagnosis and varying levels of parental health literacy. Parents may rely on easily accessible but potentially complex materials found through online searches, highlighting the importance of aligning online content with recommended reading levels. Improving readability can enhance accessibility and understanding and facilitate informed decision-making and optimal care for patients.

摘要

背景

据估计,脂肪酸氧化障碍(FAOD)在每10000例活产婴儿中约占1例。借助现代新生儿筛查,这些病症常在儿童期被发现。然而,并非所有家长都会接受定期的医学随访,而且家长的健康素养水平参差不齐,这可能会影响他们对在线资源获取信息的依赖程度。因此,评估在线材料的可读性对于确保患者能够获取并理解相关教育内容至关重要。了解可读性情况有助于我们努力提高在线资源的质量,并帮助家长和患者应对脂肪酸氧化障碍的诊断。

目的

我们的目标是评估面向公众的有关10种最常见脂肪酸氧化障碍的在线材料的可读性,并参考美国国立卫生研究院(NIH)和美国医学协会(AMA)推荐的阅读水平。

方法

我们使用弗莱什-金凯德、科尔曼-廖和烟雾可读性指数,分析了每种病症的前25个互联网搜索结果。排除空白或付费墙内容后,对232份可公开获取的材料进行了评估。

结果

平均可读性范围为11.64至12.85,表明总体复杂性高于推荐水平。只有15.5%的材料符合NIH的八年级阅读水平指南,3.9%的材料符合AMA的六年级水平。不同病症之间存在差异,符合NIH指南的百分比范围为0%至25%,符合AMA指南的百分比范围为0%至8.3%。

结论

确保关于罕见脂肪酸氧化障碍的在线资源的可读性至关重要,特别是考虑到儿童期诊断的普遍性以及家长健康素养水平的差异。家长可能会依赖通过在线搜索找到的易于获取但可能复杂的材料,这凸显了使在线内容与推荐阅读水平保持一致的重要性。提高可读性可以增强可及性和理解度,并促进患者做出明智的决策和获得最佳护理。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ccfb/11910249/62d70bcaf0dd/gr1.jpg

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