Analyzing accessibility and suitability of online Krabbe disease resources

The impact of rare diseases, like Krabbe disease (KD), collectively affecting millions worldwide, is a public health genetics issue. Because disparities in management and prognosis are often associated with health literacy levels, patient education materials (PEMs) must be accessible to parents who frequent the internet to learn about diagnoses and follow-up. This study aimed to assess accessibility and suitability of online KD resources, using results to provide recommendations for resource improvement.A Google search was conducted utilizing common search terms to identify patient-centered KD resources. Resource content was compared against an author-developed list of essential information for families. Reviewers assessed readability, using Flesch-Kincaid (FK) and Simple Measure of Gobbledygook (SMOG) formulas, and suitability utilizing the Suitability Assessment of Materials (SAM) Tool and the Patient Education Materials Assessment Tool (PEMAT).All resources included a description, symptoms, and genetics of KD. Four resources discussed genetic counseling; two mentioned next steps. Most resources (10/12) had readability scores above the recommended sixth to eighth grade levels for PEMs. The average FK and SMOG scores were 10.6 and 12.5, respectively. Eleven of twelve resources rated 'adequate' or higher using the SAM Tool. PEMAT understandability and actionability scores ranged from 55.1% to 94.1% and 0% to83.3%, respectively, due to lack of graphics and interactivity. No resource met all criteria.Although easy to navigate, resources struggled using clear, common language, utilizing graphics appropriately, promoting interactivity, and presenting concrete next steps. Resource development should focus on implementing post-diagnosis action steps and improving understanding by using common terminology and graphics to promote better care of individuals with KD.