If you're contemplating breast cancer surgery, searching online for information may not be the best way to learn about your treatment options.
Why? Educational materials on breast cancer surgery often vary widely in quality of information and tone, and they are often written above the sixth-grade reading level, new research indicates. The U.S. National Institutes of Health (NIH) recommends a sixth- to seventh-grade reading level for these materials.
"The findings are somewhat troubling because we want all of our newly diagnosed breast cancer patients to have access to high quality, easily understandable teaching materials," said Dr. Katherine Yao. She is chair of the National Accreditation Program for Breast Centers and director of breast cancer research at NorthShore University Health System in Manhasset, N.Y., and was not involved in the research.
In one study, researchers reviewed English-language patient education materials describing breast-conserving surgery, mastectomy and lymph node surgery from U.S. National Cancer Institute-designated Comprehensive Cancer Center websites. They assessed the information for readability including word count and sentence difficulty.
The average readability score was above the 11th-grade reading level, which is much higher than NIH recommendations. This is also considered above national literacy levels in the United States, where 19% of adults have low literacy skills, the researchers noted.
"These results are concerning given how low-health literacy contributes to poorer health outcomes," said study co-author Dr. Emily Palmquist. She is a breast surgeon at the University of Washington Medical Center and an assistant professor in the department of general surgery at the University of Washington School of Medicine, in Seattle.
"Improving readability of these materials is necessary to support informed patient decision-making in breast cancer surgery," Palmquist said.
These patient information resources should be updated, taking cues from the non-traditional information sources such as YouTube, blog posts and social media, she suggested.
"Meeting patients where they are and providing them information in a manner to which they are now accustomed will help patients better access information from reliable sources," Palmquist said.
Her best advice? "Look to your provider, and always feel comfortable asking for more information," she said. "As providers, we can help support the informed patient decision-making by guiding patients to reputable sources, but also helping to clarify when things are not clear."
Palmquist often suggests people look to websites that are attached to cancer centers or medical centers for information.
In related findings, the researchers searched for "breast cancer surgery" and "mastectomy" on Google, Yahoo and Bing. They analyzed resources for readability, bias, information quality and tone using validated measures. They also assessed the overall reading level.
Most content exceeded the recommended sixth-grade reading level, with an average of 10th-grade reading level. What's more, websites on breast cancer surgery scored below average for quality, and at least two or three sentences on each website had stigmatizing language.
Examples of stigmatizing language would include terms like "suffering from breast cancer," said study co-author Dr. Praveen Satarasinghe. He is a third-year resident physician in general surgery at Crozer-Chester Medical Center in Upland, Penn. A better way to phrase this is "being treated for breast cancer," he said.
A negative tone may include the use of words like unfortunate and aggressive, Satarasinghe said.
Cancer centers and organizations need to take a look at the information they are providing through these lenses. "Patients should not be discriminated against by intimidating language," Satarasinghe said. "These resources are used as a supplement to advice and care from an oncologist or breast cancer surgeon, and updating it will only help to foster relationships with our patients."
The research was presented Wednesday at the American College of Surgeons' annual meeting, in Boston. Findings presented at medical meetings should be considered preliminary until they are published in a peer-reviewed journal.
The American College of Surgeons has more on breast cancer surgery.
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