Helping Breast Cancer Patients Make Tough Choices

Computer programs, charts can help, but they're no substitute for counseling

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HealthDay Reporter

TUESDAY, July 27, 2004 (HealthDayNews) -- In today's everchanging health-care environment, cancer patients and their doctors are turning to computers and other technologies to help with complicated decisions concerning care.

However, two new studies suggest nothing beats the human touch.

Educational "decision aids" for women worried about breast cancer work just fine but can never replace expert counseling from physicians or other health professionals, such as genetic counselors, the studies found.

"In the ideal world, these things are an educational tool, perhaps for use in a 'pre-counseling' session. But otherwise, trained people absolutely need to be involved," said Dr. Charis Eng, director of clinical cancer genetics at Ohio State University.

The two studies, plus Eng's commentary, appear in the July 28 issue of the Journal of the American Medical Association.

According to Eng, recent advances in diagnostic procedures and treatments, plus a wider understanding of the role of genetics in disease, has made decision-making on the part of patients and their doctors tougher than ever.

Especially in the area of genetics, there simply aren't enough trained genetics counselors like Eng to go around -- only about 400 in the United States.

Nevertheless, "medicine is going to be pervaded by genetics and genomics," Eng said. Relying on one's doctor for up-to-date genetics information is dicey, she said, because medical schools still underemphasize genetics in their curriculum, and "most physicians aren't trained in this field."

Eng said she has seen firsthand the unfortunate results of a lack of good genetics counseling, with some doctors misinterpreting gene test results for women who worry they might have a genetic predisposition to breast cancer. In some cases, these women opt for prophylactic mastectomy -- removal of the breasts to ensure they escape the disease.

In the case of dubious genetic advice from their doctors, Eng said, "some women will call us, just to be sure, and then we pick up the pieces. But many of them have also had their breast removed because their surgeon told them the wrong thing."

Many women with a family history of breast cancer may worry they carry the BRCA1 or BRCA2 gene variants that can raise cancer risk.

In the first study, researcher Dr. Michael J. Green and colleagues at Penn State College of Medicine compared the usefulness of an educational, interactive computer program he created against traditional in-person genetics counseling. The goal: To see how the computer program helped women come to grips with issues surrounding BRCA1/BRCA2.

The computer "decision aid" first outlines the causes of breast cancer, then talks about genetic inheritance of disease in general before focusing on specific genes such as BRCA1 and BRCA2.

"We found that for improving knowledge, the computer program and the genetic counseling were both very effective," Green said. "They both raised knowledge levels considerably."

"On the other hand, knowledge isn't everything," Green added. "For lowering anxiety, counselors did better than the computer. People like talking to a counselor, they like that one-on-one interaction."

The second study, led by Timothy Whelan of Hamilton Health Services in Hamilton, Canada, examined the effectiveness of a "decision board" -- a kind of flip chart -- to help breast cancer patients make informed choices about whether to have a mastectomy or a less-radical lumpectomy.

The decision board guided women through various topics, such as "Treatment Choice," "Side Effects," and "Results of Treatment Choice for the Breast/for Survival."

The researchers found use of the chart "helpful in improving communication and enabling women to make a choice regarding treatment."

But while they may be useful tools, Eng said computer programs or decision boards should not and cannot replace the advice of a well-informed doctor or genetics counselor.

For one thing, she said, "Who's going to keep these things updated?" Genetics research is proceeding at an incredibly fast pace, she pointed out, so what seems like good information today may be obsolete a year from now. The genetics of disease is also becoming increasingly complicated, with malignancies dependent on the interaction of a number of genes, not just a single mutation, Eng said.

Green agreed, stressing that his computer program "isn't designed to give people specific advice."

"It's not a substitute for talking to a health-care professional," he said. "It's designed to provide information -- it doesn't tell them whether or not to get tested, or their specific risks for breast cancer, it's much more general. If they have specific questions they should always talk to a treatment professional."

More information

To learn more about breast cancer, visit the American Cancer Society.

SOURCES: Charis Eng, M.D., Ph.D., professor and director, Clinical Cancer Genetics, Ohio State University, Columbus, and professor, University of Cambridge, Cambridge, England; Michael J. Green, M.D., M.S., associate professor, departments of Humanities and Medicine, Penn State College of Medicine, Hershey, Pa.; July 28, 2004, Journal of the American Medical Association

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