TY - JOUR
T1 - Analysis of readability of the top web searches for pediatric inborn errors of fatty acid metabolism
AU - Sawyer, Katelyn
AU - Miller, William C
AU - Popp, Courtney M
AU - Strege, Chloe
AU - Eide, Cindy R
AU - Tolar, Jakub
N1 - Publisher Copyright:
© 2025
PY - 2025/3
Y1 - 2025/3
N2 - 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.
AB - 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.
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U2 - 10.1016/j.ymgmr.2025.101195
DO - 10.1016/j.ymgmr.2025.101195
M3 - Article
AN - SCOPUS:85215851623
SN - 2214-4269
VL - 42
JO - Molecular Genetics and Metabolism Reports
JF - Molecular Genetics and Metabolism Reports
M1 - 101195
ER -