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Study: Online Info about Pancreatic Cancer Often too Complex, Inaccurate for Patients

May 10, 2016
by Rajiv Leventhal
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New research from Beth Israel Deaconess Medical Center (BIDMC) suggests that online information about pancreatic cancer is often written at a prohibitively high reading level and lacks accuracy concerning alternative therapies.

The study, recently published in JAMA Surgery, compared the accuracy and readability of patient-oriented online resources for pancreatic cancer by treatment method and website affiliation, such as privately owned, media, academic or government websites. The researchers conducted an online search of 50 websites discussing five pancreatic cancer treatment methods (alternative therapy, chemotherapy, clinical trials, radiation therapy and surgery). Readability was measured by nine standardized tests, and accuracy was assessed by an expert panel.

"We found that the median readability level was higher than recommended, requiring at least 13 years of education to be comprehended, but only 58 percent of the adult U.S. population has attained this level of education," Tara Kent, MD, a pancreatic surgeon at BIDMC and assistant professor of surgery at Harvard Medical School, said. "These data indicate that online information about pancreatic cancer is geared to more educated groups. The general population and vulnerable groups—particularly those with low health literacy—will likely struggle to understand this information."

Undoubtedly, the Internet has become a powerful and important resource for daily life. When patients receive a medical diagnosis, particularly a difficult one like pancreatic cancer, the web can be an essential information tool, helping to enable patients to have meaningful discussions with healthcare providers. According to the researchers, the degree to which patients are empowered by written educational materials depends on the text's readability level and the accuracy of the information provided. A patient's health literacy or ability to comprehend written health information can impact clinical outcomes. Reading materials are rarely written at the sixth to seventh-grade reading level recommended by literacy specialists and multiple national institutions.

The authors also found considerable differences among website affiliations and among websites discussing treatment methods. Those discussing surgery were easier to read than those discussing radiotherapy and clinical trials. Websites of nonprofit organizations were easier to read than media and academic websites. Nonprofit, academic, and government websites had the highest accuracy, particularly those relating to clinical trials and radiotherapy. Alternative therapy websites exhibited the lowest accuracy scores. Websites with higher accuracy were more difficult to read than websites with lower accuracy.

"This research illustrates one of the challenges incurred in the creation of accurate, yet understandable online information about a complex disease and its treatment options," the authors wrote. "In the absence of an Internet librarian, healthcare professionals should acknowledge that online information on aggressive diseases such as pancreatic cancer could be misleading and potentially harmful, and they should assume an active role in the evaluation and recommendation of online resources."



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