Nationwide evaluation of readability, quality, and cultural sensitivity of online brain cancer education materials in the United States.

Résumé

BACKGROUND: Patients with primary brain tumors navigate a devastating diagnosis and cognitive and physical decline. Available educational materials should be easily comprehensible, informative, reliable, culturally sensitive, and patient oriented.METHODS: We assessed websites of major brain tumor centers in the United States and patient organizations for readability using multiple calculators, quality and reliability using DISCERN and JAMA tools, and cultural sensitivity using the Cultural Sensitivity Assessment Tool scale. We determined whether sites addressed practical, emotional, social, and spiritual needs of a patient. Brain tumor centers were categorized based on NCI-designation and fulfillment of Guiding Principles developed by the American Brain Tumor Association.RESULTS: Websites of 91 brain tumor centers and 8 patient organizations were examined. Fewer than 10% of brain tumor centers' websites were readable at an eighth-grade level. There was no significant difference in readability between brain tumor centers and patient organizations. Patient organizations outperformed brain tumor centers on both quality measures, with no differences seen based on the category of centers. Only 48% of brain tumor centers and 63% of patient organizations scored at recommended levels on all cultural sensitivity scales. Most patient organizations, but few brain tumor centers, addressed practical, social, emotional, and spiritual needs.CONCLUSIONS: Publicly available brain tumor education materials are frequently at a high reading level. Quality and cultural sensitivity can be improved by citing sources, describing treatment risks, describing outcomes without treatment, addressing quality of life during treatment, addressing myths, and visually representing more patients. Patient organizations can provide models for addressing patient needs.