The Library Is Open: Reading Online Patient Education Materials on SUDEP
Abstract number :
1.162
Submission category :
17. Public Health
Year :
2024
Submission ID :
1155
Source :
www.aesnet.org
Presentation date :
12/7/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Maksim Bakrenev, MD – Montefiore Medical Center/Albert Einstein College of Medicine
Trisha Chabria, MD – Montefiore Medical Center/Albert Einstein College of Medicine
Eleni Drakou, MD – Children’s Hospital at Montefiore, Albert Einstein College of Medicine, and the Montefiore Medical Center
Amelia Brown, BA – Princeton University
Jacqueline Atchley, BA – Princeton University
Daniel José Correa, MD, MSc – Montefiore Medical Center/Albert Einstein College of Medicine
Rationale: SUDEP is a rare but significant cause of mortality in epilepsy that is not well known to the public. A recent change in New York State law has mandated the education of SUDEP by providers to patients, increasing public knowledge of this phenomenon. Previous analyses have shown that online patient education materials (PEMs) within Epilepsy and other neurologic diseases are more complex than the recommended sixth grade reading level. To our knowledge, this study is the first readability analysis of PEMs on SUDEP. The goal of this study is to analyze readability of online patient education materials (PEMs) designed to educate patients and families on Sudden Unexpected Death in Epilepsy (SUDEP).
Methods: Using a private web-browser, the top 100 search results from a Google and Bing search were extracted using the terms “SUDEP” and “Sudden Unexpected Death in Epilepsy,” of which 52 websites met the inclusion criteria. Links to scientific papers, insurance pages, pay-wall access sites, and non-text content were excluded. Websites were categorized as community, academic or industry organization and based on the age of the population they addressed (adult, pediatric or both). Text from the website was re-formatted to exclude graphics and material not directly related to the educational content. Readability metrics like the Flesch Reading Ease Score (FRES), Flesch-Kincaid Grade Level (FKGL), and the Simple Measure of Gobbledygook (SMOG) and text characteristics (number of sentences and paragraphs, percentage of difficult words and characters per word) were calculated using an online readability tool (Datayze Readability Analyzer). Using the Wilcoxon rank test, we compared these metrics between types of organizations.
Results: All PEMs across all organizations were less readable than the recommended level based on FRES (p< 0.001) and SMOG (p< 0.001). Industry PEMs were less readable compared to community and academic organizations (p< 0.05), and community organizations tended to use smaller words (p=0.08). There was no significant difference in readability metrics and characteristics based on age of population addressed.
Public Health