Are English-language online patient education materials related to breast cancer risk assessment understandable, readable, and actionable?

PURPOSE: To evaluate the readability, understandability, and actionability of online patient education materials (OPEM) related to breast cancer risk assessment. MATERIAL AND METHODS: We queried seven English-language search terms related to breast cancer risk assessment: breast cancer high-risk, breast cancer risk factors, breast cancer family history, BRCA, breast cancer risk assessment, Tyrer-Cuzick, and Gail model. Websites were categorized as: academic/hospital-based, commercial, government, non-profit or academic based on the organization hosting the site. Grade-level readability of qualifying websites and categories was determined using readability metrics and generalized estimating equations based on written content only. Readability scores were compared to the recommended parameters set by the American Medical Association (AMA). Understandability and actionability of OPEM related to breast cancer high-risk were evaluated using the Patient Education Materials Assessment Tool (PEMAT) and compared to criteria set at ≥70%. Descriptive statistics and inter-rater reliability analysis were utilized. RESULTS: 343 websites were identified, of which 162 met study inclusion criteria. The average grade readability score was 12.1 across all websites (range 10.8–13.4). No website met the AMA recommendation. Commercial websites demonstrated the highest overall average readability of 13.1. Of the 26 websites related to the search term breast cancer high-risk, the average understandability and actionability scores were 62% and 34% respectively, both below criteria. CONCLUSIONS: OPEM on breast cancer risk assessment available to the general public do not meet criteria for readability, understandability, or actionability. To ensure patient comprehension of medical information online, future information should be published in simpler, more appropriate terms.