LB: Cloudy or Clear? Assessing Readability and Content Inclusion of Online Myasthenia Gravis Patient Materials.

Topic:

Other

Poster Number: T439

Author(s):

Eleni Drakou, MD, Isabelle Rapin Division of Child Neurology in the Saul R Korey Department of Neurology and Children's Hospital at Montefiore, Ali Aziz, MD, Saul Korey Department of Neurology, Albert Einstein College of Medicine and the Montefiore Medical Center, Leslie Delfiner, MD, Isabelle Rapin Division of Child Neurology in the Saul R Korey Department of Neurology and Children's Hospital at Montefiore, Daniel Correa, MD, MSc, Saul Korey Department of Neurology, Albert Einstein College of Medicine and the Montefiore Medical Center, Office of Diversity Enhancement, Albert Einstein College of Medicine

Background: Health literacy in Myasthenia Gravis (MG) is crucial given its chronicity, high risk of complications and growing treatment options. Reading levels of online patient education materials (PEMs) have been identified as above recommended sixth-grade level in other neurologic conditions. Within MG, PEM readability and content analysis has not been previously reported.
Objectives: To evaluate the readability level of online PEMs for MG and inclusion rates of key MG topics.
Methods: We collected the top 40 Google results with eligible publicly-accessible education materials. Content was reviewed for inclusion of key topics (definition and background, symptoms, disease-modifying therapies, thymectomy, crisis, cautionary medications, mental health). Using “Datayze Readability Analyzer” we obtained document characteristics (e.g. number of sentences, paragraphs, characters) and readability scores (FRES, FKGL, SMOG). Using the Wilcoxon rank test, we compared PEM reading levels, readability scores and document characteristics based on source (community vs. academic) and the inclusion of information for the pediatric population (adult only vs. pediatric and/or adult). With the Fisher’s exact test, we assessed key topic inclusion rates.
Results: All PEMs did not meet recommended reading levels (FRES p<0.01; FKGL p<0.01; SMOG p<0.01) without significant differences based on source type or inclusion of information specific to pediatrics. Regardless of source, most PEMs included content on MG definition and background (97.5%), common symptoms (100%), disease-modifying therapies (93%) and thymectomy (93%). Fewer PEMs addressed myasthenic crisis (78%), cautionary medications (58%), and mental health (10%). Community sources addressed cautionary medications (58%, p=0.03) at significantly higher rates than academic organizations. PEMs that included more key topics were easier to read (p=0.01).
Conclusions: Across sources, all PEMs for MG are less readable than recommended. Community sources more frequently highlight safety considerations. Simplification of PEMs and inclusion of key topics may help MG patients improve understanding of their condition and participate as informed shared-decision-makers.