Available information on pancreatic cancer was written at too high a level and contained inaccuracies regarding alternative therapies, a study published in JAMA Surgery has shown.1
The internet can be a valuable resource to find information after the challenging diagnosis of pancreatic cancer, allowing patients to have meaningful conversations with clinicians about their diagnosis and disease.
“We know from past research that people are strongly influenced by what they read online, and they believe that what they read on the Internet will help them make better health care decisions,” said Tara Kent, MD, a pancreatic surgeon at Beth Israel Deaconess Medical Center and assistant professor of surgery at Harvard Medical School, Boston, Massachussetts, and senior author of the study.
Whether educational materials enable a patient depends on if those materials are at an appropriate level of readability and if the information is accurate. A patient’s ability to understand the health information and the patient’s health literacy can affect clinical outcomes. In spite of this, reading materials are not often written at the recommended 6th-grade to 7th-grade reading level that literacy specialists recommend.
This study examined the accuracy and readability of online resources for pancreatic cancer that have patients as the intended audience. Researchers evaluated the material by treatment method and website affiliation, such as whether the website is privately owned.
Among the 50 websites evaluated, 5 treatments for pancreatic cancer were described. These were alternative therapy, chemotherapy, clinical trials, radiation therapy, and surgery. Nine standardized tests measured readability, and an expert panel determined accuracy.
“We found that the median readability level was higher than recommended, requiring at least 13 years of education to be comprehended, but only 58% of the adult US population has attained this level of education,” said Kent.
“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.”
Researchers also discovered differences correlated with website affiliation and with the treatments described. Websites describing surgery were more readable than websites discussing radiotherapy and clinical trials. Nonprofit websites were more readable than websites affiliated with media and with academia.
The highest accuracy existed in nonprofit, academic, and government websites, especially when discussing clinical trials and radiotherapy. Alternative therapy websites were the least accurate. Websites with higher accuracy were less readable 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,” wrote the authors.
1. Storino A, Castillo-Angeles M, Watkins AA, et al. Assessing the accuracy and readability of online health information for patients with pancreatic cancer [published online ahead of print May 4, 2016]. JAMA Surgery. doi:10.1001/jamasurg.2016.0730.