Study highlights inadequacies in online patient education materials for AMD
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Patient education materials related to age-related macular degeneration treatment are often written at inappropriate reading levels and lack accountability, according to a presentation at the American Society of Retina Specialists meeting.
“After a patient is diagnosed with AMD, it is likely that they turn to the internet to learn more about their disease,” Carolyn K. Pan, MD, of the Byers Eye Institute at Stanford University, said.
Online searches for new treatments tend to rise after FDA approval, so “it is imperative that patient education materials that currently populate after a Google search are both easily comprehendible and accurate,” she said.
A Google Trends-assisted study analyzed 100 websites containing patient education materials related to 10 AMD diagnosis and treatment search terms following FDA approval of Syfovre (pegcetacoplan injection, Apellis Pharmaceuticals) for geographic atrophy. Websites were measured using established criteria for readability, accountability and accessibility.
The average grade level of online AMD patient education materials was 9.6, which exceeds the 6th grade reading level recommended by the AMA. Sixty-seven percent of online patient education materials related to AMD were produced by private practices or independent organizations, followed by 14% from national organizations, 10% from educational institutions and 9% crowdsourced. Google Trends showed a significant increase in searches for “Syfovre” and “geographic atrophy” following FDA approval.
Of the 10 AMD-related search terms used, results showed that there were no significant differences in readability. Crowdsourced articles had a higher accountability than articles from private practices/independent organizations and educational institutions. However, there was a significant difference when comparing readability of crowdsourced articles, which were considered “more difficult to read,” with all other sources combined.
The study authors concluded that most patient education materials related to AMD are written at inappropriate reading levels and lack accountability based on established metrics. Pan suggested that patients would benefit from more easily accessible online education materials from reputable sources.
“With improved health literacy, people make informed health decisions, which can lead to improved patient outcomes,” Pan said.
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Cohen S, et al. A Google Trends assisted analysis of online patient education materials for the treatment of age-related macular degeneration after FDA approval of pegcetacoplan. Presented at: American Society of Retina Specialists annual meeting; July 17-20, 2024; Stockholm.
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