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More patient information may not lead to best care

Last Updated: 2009-02-23 14:28:21 -0400 (Reuters Health)

February 24, 2009

By Anne Harding

NEW YORK (Reuters Health) - Colon cancer patients who seek out more information about their care are more likely to be prescribed cutting-edge, expensive medications that aren't necessarily the best drugs for them, new research shows.

Bevacizumab, sold as Avastin, and cetuximab, brand name Erbitux, are U.S. Food and Drug Administration-approved for treating advanced colon cancer. They are known as targeted therapies; Avastin prevents the development of new blood vessels to tumors, while Erbitux shuts down a protein that regulates cell growth. While both drugs are the standard of care for patients with disease that has spread beyond the colon, or metastasized, they are not approved for use in patients with earlier-stage cancer.

Dr. Stacy W. Gray from the Dana-Farber Cancer Institute in Boston and associates surveyed 633 colon cancer patients to see if information-seeking behavior was related to whether the patients had heard of these drugs and whether they were taking them.

Patients were classified as "high seekers" if they used three or more information sources (for example, face-to-face or on-line support groups, TV or radio, newspapers or magazines, the Internet) to find out about the illness. Most of the study participants said they actively sought information about their illness from at least one source.

Overall, 14 percent of all of the patients had heard of targeted therapy, while 10 percent said they were receiving it. About half of the patients with metastatic cancer reported taking targeted therapy, while 3 percent of those with earlier-stage cancer said they were on one of the drugs.

Given that the large majority of patients in the study had non-metastatic disease (84 percent), this meant 25 percent of the study participants were receiving targeted therapy that was not approved by the FDA.

The patients who were high seekers were 2.83-times more likely to report that they had heard of Avastin or Erbitux, and 3.22 times as likely to say that they were taking one of these drugs.

When the researchers looked at individual sources, they found that Internet use, newspaper or magazine use, or consultation with another health professional increased a patient's likelihood of having heard about targeted therapy, while those who sought information from another health professional were more likely to report receiving it.

"The primary question that this finding raises is whether information seeking leads to more treatment or whether receiving treatment leads to information seeking," Gray and her team note in the April 1 issue of the journal Cancer.

People are used to hearing that being an "informed consumer" is a good thing, but we don't really know if this is true, Gray told Reuters Health. "I think that one of the reasons that we need to do research in this area is there might be some downsides."

While taking targeted therapy for non-FDA-approved indications isn't necessarily harmful, it doesn't appear to be helpful, and it is costly, she added; both drugs cost thousands of dollars, and someone on Avastin may take it for months or even years. For example, Erbitux will cost society an estimated $1.5 billion annually when used only to treat metastatic colon cancer, she and her colleagues note in their report. "As a society, we have not yet determined how to deal with these costs," they write.

The findings don't mean seeking out information is a bad thing, Gray added, but they do show that patients need to use reliable sources, and to discuss this information thoroughly with their physician. "Just because you read about a development doesn't necessarily mean that that's the best drug for you. That's why again it's critical to talk to your doctor," she said.

"The ultimate question is whether or not very informed patients are living longer or very informed patients have lower chances of cancer recurrence," Gray said. "Those are the questions that need to be evaluated in future studies."

SOURCE: Cancer, April 1, 2009.

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