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Some Melanoma Web Sites Only Skin Deep

Online information can be inaccurate or incomplete, researchers find

WEDNESDAY, Jan. 2, 2002 (HealthDayNews) -- Savvy searchers for online health information about melanoma need to be skeptical, say experts who have studied popular Web site offerings on the deadly skin disease.

Not only was some of the information incomplete, it was downright wrong, researchers at the University of Michigan Health System found. At least one consumer health advocate isn't surprised at their results, which are published in the January 2002 issue of the Journal of Clinical Oncology.

Melanoma is cancer of the skin cells that produce skin pigment. People who are fair-skinned, or who have a large number of moles or freckles, are at greater risk of this disease. Exposure to ultraviolet light, such as that in sunlight or light from tanning beds, is also a risk factor for melanoma.

There are more than 51,000 cases of melanoma every year in the United States, but although melanoma accounts for only 4 percent of all skin cancers, it causes approximately 79 percent of skin cancer deaths. About 7,800 Americans die of this disease every year.

"We're seeing melanoma in younger and younger patients," says lead investigator Dr. Christopher Bichakjian, a dermatologist specializing in skin cancers. "That's the group of the population that is obviously very Internet-savvy."

He and his colleagues were also struck by the numbers of their patients who had downloaded melanoma information that was incomplete, incorrect or did not apply to their condition.

Led by Bichakjian, the researchers mimicked how a patient might use the Web to research the disease by searching for "melanoma" on Yahoo!, MSN, Lycos, Netscape, Go and Excite, as well as the medical search engines Med Hunt and Medical World Search. The engines returned a total of 240 hits.

After discarding results that led to dead links, duplicate sites or pages listing links, the researchers were left with 74 Web sites. Each study member then graded those against a 35-point checklist of whether the site included such basics as definitions, incidence rates, risk factors and treatment options.

Only half the sites met eight out of the 35 criteria set out by the researchers. Sixty-two percent of the sites defined melanoma, but only 47 percent included statistics on melanoma's incidence in the population.

More than half the sites listed signs and symptoms of melanoma, and 59 percent provided correct information on a patient's prognosis depending on the stage at which treatment began.

But only 38 percent of them stressed the importance of screening for melanoma, and less than a third provided images of melanoma tumors as references.

Of the 74 sites, 14 percent included information that was incorrect.

"In general, the information … was lacking a lot," says Bichakjian.

Among the best sites, says Bichakjian, were the National Cancer Institute's CancerNet and Australia's University of Sydney melanoma Web site.

At the bottom of the list were personal Web sites that, for example, chronicled an individual's battle with the disease. The sites, which Bichakjian says were often among the first 30 hits in a search, were frequently incomplete, inaccurate and applied only to that one person's case.

Bichakjian's advice for consumers seeking information about melanoma?

"Focus on the large institutions, [such as] governments and universities," he says. "Try to stick with the Web sites of those organizations rather than going to the smaller, maybe less accurate, maybe less reliable [sites]."

Dr. Stephen Barrett, a consumer advocate for reliable health information, says that finding good information on the Net is difficult.

"It requires experts to determine whether content for consumers is reliable," says Barrett, who is vice president of the National Council Against Health Fraud. He adds that accuracy isn't enough, and that truly outstanding sites deliver comprehensive information put in a wider context.

Barrett says that the Health on the Net Foundation, a nonprofit organization that sets ethical standards meant to ensure useful and reliable information on Web sites that abide by its rules, filters out the truly bad sites but logistically can't perform in-depth reviews of site content.

Consumers should "stick with the major organizations," he says, although that approach still isn't 100 percent reliable.

What To Do

Barrett is launching Internet Health Pilot, a site listing health Web sites that have been voluntarily reviewed by experts.

Check out Barrett's "Signs of a 'Quacky' Web site" from Quackwatch.com. He recommends the Merck Manual Home Edition as an excellent source of general health information.

For information about melanoma, visit the Web sites for the American Cancer Society or the National Cancer Institute.

SOURCES: Interviews with Christopher K. Bichakjian, M.D., lecturer, department of dermatology, University of Michigan Health System, Ann Arbor, Mich.; Stephen Barrett, M.D., retired psychiatrist, Webmaster for Quackwatch.com, and vice president, National Council Against Health Fraud; January 2002 Journal of Clinical Oncology
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