By Kathryn Doyle
NEW YORK (Reuters Health) - When researchers evaluated a dozen websites meant to inform patients about colon cancer screening, most were written at too high a reading level and lacked important risk and benefit information.
This isn't a new problem. Researchers have known for at least 20 years that many materials written for patients, not just those about colonoscopy, are not up to snuff, according to Terry C. Davis.
Davis, a professor at Louisiana State University Health Sciences Center in New Orleans, was not involved in the new report but has been studying health literacy and the quality of patient information for more than a decade.
"Health information is written at too high a level and it's not user friendly," Davis told Reuters Health. "It's too complex and there's too much jargon."
For the new study, reviewers led by Dr. Deepak Agrawal at the Division of Digestive and Liver Diseases at the University of Texas Southwestern Medical Center in Dallas evaluated the websites and scored them on readability, suitability and how they would affect patient beliefs about colonoscopies. Three separate reviewers scored each site.
Of the 12 popular websites the researchers looked at, 10 were written above the recommended sixth-grade reading level. Medline Plus and UpToDate Basics were the most readable sites. The American Society for Gastrointestinal Endoscopy's patient information website Screen4coloncancer was found to be the hardest to read.
Only half of the websites discussed colon cancer risk in the general population and less than a quarter addressed specific groups at greatest risk, namely African Americans, smokers and people with diabetes or obesity.
The Centers for Disease Control and Prevention (CDC) site (here: http://1.usa.gov/1l5MNiu) was the only one to receive a "superior" suitability score.
The CDC recommends that all people over age 50 start getting screened for colon cancer regularly, and people at higher risk might need to start earlier. Colonoscopy, a similar technique called sigmoidoscopy as well as fecal occult blood testing - a test for blood in the stool - are all accepted methods of colon cancer screening.
No websites specifically mentioned that people who qualify for screening need to do it even if they have no symptoms, like blood in the stool, stomach pains or unexplained weight loss.
Only three of the sites discussed cost and potential pain involved in a colonoscopy, and only one mentioned the potential embarrassment of the procedure, according to the study results published in Gastrointenstinal Endoscopy.
Colonoscopies can cost from $1,500 to $3,500 and prices may even vary in the same town, Davis said.
Since many prior studies had come to the same conclusion about health materials in print, this result wasn't unexpected, Agrawal told Reuters Health in an email.
But he was surprised that almost all the websites needed to improve their content and presentation significantly, he said.
"The question that baffles me," Agrawal said, "is that we have known that we present material to our patients in ways that are difficult for them to understand but why has there been so much inertia to changing that?"
Most information online is unnecessarily complex, Davis said, which may be because the experts who write the content believe their audience is more sophisticated than in reality.
"Six out of 10 patients now get at least some of their information about colon cancer screening on the Internet," Agrawal said, and regardless of literacy most people have access to it, so readability is important.
Websites can be useful for patients, but should never take the place of talking to a doctor, he added.
Patients shouldn't be afraid to keep asking questions of their doctor until they fully understand, Davis said.
"I believe that the professional medical societies we surveyed are still the best web resources for information for the patients," Agrawal said. "We just have to do a better job of presenting the same information in a way that is more understandable to the people and one that makes sense to them."
SOURCE: http://bit.ly/1fLwjYZ Gastrointestinal Endoscopy, March 25, 2014.