2.2. Educational material development

We conducted an educational inventory of existing materials that were identified beginning with an investigator generated list of known United States-based breast cancer (e.g. Susan G. Komen) or breast density advocacy (e.g. DenseBreast-info) organizations, or related professional organizations (e.g. American College of Radiology). We searched each organization’s website for available materials with additional sources identified via a Google search. To be eligible for readability assessment, materials had to be written in English and intended for patients or a lay audience—not clinicians. We also only included sources that reported a date last updated to ensure educational material was current. We assessed readability using Flesch-Kincaid Grade Level [16]. Text from each educational material was copied into a Microsoft Word document with headers and extraneous text (e.g. organization, address, etc.) removed. Flesch-Kincaid Grade Level which was obtained from the calculated readability statistics of each material’s text. Study data were collected and managed using REDCap (Research Electronic Data Capture) tools hosted at Boston University (CTSI UL1TR001430) [17].

We facilitated a discussion with 10 breast cancer patient advocates about their experiences with dense breast notification, their opinions and comprehension of two selected existing breast density educational materials, their top three priorities for breast density education, and their preferences for the form and formatting of newly developed educational material(s). We used those findings and the Health Literacy Universal Precautions Toolkit [18] to develop a printed brochure for women undergoing breast cancer screening.