Women unlikely to carry certain cancer mutations may be able to get the information they need from a computer interface, but the flesh-and-blood type are more effective at helping women understand their risk of getting cancer. Such are the conclusions by researchers from the Penn State College of Medicine, whose study is being published in Wednesdays issue of the Journal of the American Medical Association.
Only about 400 genetic counselors nationwide specialize in cancer, and most are in urban areas. Meanwhile, the availability of and demand for genetic tests to detect inherited cancer risk are increasing, according to the researchers. That leaves many women who are concerned about their cancer risk without access to a counselor who can help them decide whether to go through with genetic testing. Computer programs could help fill this gap, postulated the researchers.
The study compared the effectiveness of an interactive computer program to standard genetic counseling for educating women about genetic testing. Just over 200 women with personal or family histories of breast cancer were assigned as having a “high” (over 10 percent) or “low” (under 10 percent) chance of carrying the BRCA1 or BRCA2 mutation, which makes carriers more likely to have breast cancer.
Women in each group were randomly assigned to meet directly with a genetic counselor or to work with a computer program before meeting with a genetic counselor. Surveys before and after each session as well as one month and six months after the study assessed participants knowledge, risk perception, intention to undergo genetic testing, decisional conflict, satisfaction with decision, anxiety and satisfaction with the intervention. The computer program allowed patients to work at their own pace and reread sections as desired.
For women at low risk of carrying the mutations, knowledge increased more in the group of women assigned to work with the computer program than for those who only met with a counselor. However, genetic counseling was more effective for reducing womens anxiety and helping them more accurately assess their chance of getting breast cancer. At the onset of the study, women in both groups had an inflated view of their absolute risk.
“These results suggest that the computer program has the potential to stand alone as an educational intervention for low-risk women, but should be used in combination with one-on-one genetic counseling for women at high risk,” said Michael Green, M.D., M.S., associate professor of humanities and medicine at Penn State College of Medicine, who led the study. Dr. Green has also received royalties from sales of the CD-ROM of the program, which is made available through Medical Audio Visual Communications Inc.
Angela Musial, a cancer genetic counselor at California Pacific Medical Center in San Francisco, said she can envision the program as part of the referral process. “Patients might use it in their primary care physicians, gynecologists or oncologists office to determine if they are candidates for genetic counseling and possible genetic testing,” she said.
Such programs might supplement genetic counseling, but could not replace it, she said. “I spend one and a half hours with patients in just the first session because so many questions are generated by the information presented. I am not sure a computer program could adequately address their questions and concerns.”