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Web info on prostate cancer tough to understand

By Amy Norton

NEW YORK (Reuters Health) - There's no shortage of websites with information on prostate cancer treatment, but they may be well beyond the average person's comprehension, a new study finds.

The study, of 62 such websites, found that only three had treatment information written below a 9th-grade reading level. Most often, sites aimed for the reading level of a high school senior - far beyond the reading skills of many Americans.

That's a worry, researchers say, because there is a range of treatment options for prostate cancer. And if men are going to make good choices, they need to understand the information out there.

Dr. Chandy Ellimoottil, who worked on the study, said he regularly asks newly diagnosed prostate cancer patients whether they've done any online research on their own, and what they've found.

"And I could tell from the conversations that they often really don't understand what they are reading," Ellimoottil said.

So he and his colleagues at Loyola University Medical Center in Maywood, Illinois, decided to test the "readability" of websites with resources on prostate cancer treatment. They pulled information from 62 websites and used two standard tools that gauge how easy a text is to read.

They found that a 12th grade reading level was typical of the sites, and more than half required college-level reading skills to comprehend.

It's surprising that so many websites would be written at such a high level, according to Dr. Gopal Gupta, who also worked on the study.

The National Institutes of Health (NIH) recommends that written information for patients be at the 4th to 6th grade reading level, Gupta noted.

Yet none of the sites his team analyzed met that goal. And only a few were written at an 8th-grade reading level or below - even though that is the reading level of about one-third of Americans.

Gupta pointed out that even the patient education materials from the American Urological Association Foundation - the specialists who treat men with prostate cancer - were written at a college reading level.

He said the message for health professionals is to "look at your literature. Are patients really going to understand it?"

For now, Ellimoottil said there are some websites that are both trustworthy and relatively readable when it comes to prostate cancer treatment.

The NIH website MedlinePlus has information written at the 8th to 9th grade level (though that's still above the NIH's own recommendation). And the National Comprehensive Cancer Network gives information at about a 7th to 8th grade reading level.

And if you find information that you don't fully understand, you can print it out and bring it to your doctor to discuss, Ellimoottil said.

But always be wary of the source of that online information, cautioned Dr. Kerry L. Kilbridge, of Beth Israel Deaconess Medical Center in Boston.

Information from sponsored sites - those funded by drug companies or device makers - may be biased, said Kilbridge, who was not involved in the study.

"It's best to stick to vetted, unbiased sites like those maintained by the National Cancer Institute and the American Cancer Society," Kilbridge said in an email.

Both Ellimoottil and Gupta agreed that skepticism is in order. And with prostate cancer, Gupta said, being well-informed is especially important because men often have a number of treatment options - and they are not necessarily easy to understand.

Prostate cancer is often slow-growing and may never progress to the point of threatening a man's life. In fact, about half of U.S. men diagnosed with prostate cancer fall into that "low risk" group, according to the National Cancer Institute.

"If you have low-risk disease," Gupta said, "you have four reasonable treatment options: active surveillance, surgery and two types of radiation therapy."

Active surveillance means delaying treatment and instead monitoring the cancer to see if it progresses. Many men balk at that, Gupta said. "They think, 'What do you mean you're not going to do anything? Get it (the cancer) out of me.'"

If men don't fully understand active surveillance, he noted, they may not choose it even if it's a good option for them.

Of course, there are other information sources than the Internet. Besides your own doctor, Kilbridge said, the National Cancer Institute has a toll-free number (1-800-4-CANCER) staffed by specialists who can help cancer patients get the information they need.

SOURCE: http://bit.ly/RiPkJg Journal of Urology, online October 18, 2012.

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