Counselors were, however, more effective than the computer program at reducing women's anxiety and helping them to more clearly understand their risk, reported the study published today (July 28, 2004) in the Journal of the American Medical Association.
"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 J. Green, M.D., M.S., associate professor of humanities and medicine, Penn State College of Medicine. "The computer program is an alternative means of communicating information about genetic testing and may help women without access to genetic counselors to decide whether or not to have genetic testing for susceptibility to breast cancer."
Most women concerned that they are at risk for developing breast cancer are referred to genetic counselors who can assess a women's risk, advise her about testing and explain the options. But, with only about 400 genetic counselors in the U.S. who specialize in cancer genetic counseling and most located in urban areas, many women do not have access to genetic counseling for cancer.
"The reason we developed the computer education program was to try to fill this educational need," Green said. "Our previous studies showed that the program is acceptable to genetic counselors and their clients, and effective at increasing knowledge about breast cancer risk and genetic testing."
The computer program, called "Breast Cancer Risk & Genetic Testing," delivers much of the information a genetic counselor would. Its purpose is to help women make informed decisions about genetic testing and address who is at risk for breast cancer, how genes like BRCA1 and BRCA2 affect cancer risk, and the pros and cons of testing.
The goal of this study was to compare the computer program's effectiveness with standard genetic counseling and to determine when the computer program could be used alone and when it should be used in combination with genetic counseling.
Study volunteers were recruited at six U.S. medical centers: Penn State College of Medicine, Hershey, Pa.; Lehigh Valley Hospital and Health Network, Allentown, Pa.; University of Pittsburgh Medical Center; The University of Texas M.D. Anderson Cancer Center, Houston; Baylor Medical College, Houston; and Evanston Northwestern Healthcare, Evanston, Illinois. The volunteers – 211 total – all had personal or family histories of breast cancer.
Women were divided into two risk groups, low and high. "Low" was defined as having a less than 10 percent chance of carrying the BRCA1 or BRCA2 mutation, and "high" defined as having a 10 percent or greater chance of carrying the mutation. Women in each risk group were then randomized into a one-on-one counseling group, or a computer group, who used the computer program before meeting with a genetic counselor.
The study team gave each woman a baseline survey. Those in the computer program group were given a second survey after going through the program and before their genetic counseling session. Both groups were surveyed again after meeting with the genetic counselor. One month and six months later, study representatives contacted the women to collect information about their genetic testing decisions.
Results showed that the computer program was well-received by participants who considered it to be a good use of their time and adaptable to their own learning pace. It also was particularly effective at increasing knowledge about hereditary breast cancer and genetic testing.
"In fact, the program was more effective at increasing knowledge than was genetic counseling among low-risk women," Green said. "One possible explanation is that women were able to go through the program at their own pace, re-read sections and learn using multiple formats and simple examples."
Most women at low risk for carrying a BRCA1 or BRCA2 mutation mistakenly estimated their risk of cancer to be quite high, which could have led to inappropriate or unnecessary genetic testing. The computer program was found to be effective in reducing low-risk women's perceived risk of getting breast cancer and their intention to undergo genetic testing. One-on-one genetic counseling, however, was found to be superior in helping women to better understand their risk and for reducing anxiety.
"Our results suggest that for the majority of women who are at low risk of carrying BRCA1/2 mutations, the computer program is likely to be an effective way to improve knowledge and address most questions about hereditary cancer risk and genetic testing," Green said. "Given the growing demand for education and testing in primary care and the limited knowledge of genetics by primary care practitioners, the use of our computer program by low-risk women can help reduce unnecessary referrals to genetic counselors and reserve one-on-one counseling for those who need it most, namely, high-risk women."
For women at high risk or those in need of psychosocial support, the computer is best used as a supplement to rather than a replacement for genetic counseling, Green said.
The study team included: Susan K. Peterson, Ph.D., M.P.H., The University of Texas M.D. Anderson Medical Center, Texas; Maria Wagner Baker, Ph.D., Penn State Cancer Institute, Penn State Milton S. Hershey Medical Center; Gregory R. Harper, M.D., Ph.D., Penn State Cancer Institute, Lehigh Valley Hospital, Allentown, Pa.; Lois C. Friedman, Ph.D., Baylor College of Medicine, Texas; Wendy S. Rubinstein, M.D., Ph.D., Evanston Northwestern Healthcare, Evanston, Ill.; and David T. Mauger, Ph.D., Penn State College of Medicine.
Copies of the computer program, "Breast Cancer Risk and Genetic Testing," are available through Medical Audio Visual Communications, Inc. Suite 240, 2315 Whirlpool Street, Niagara Falls, New York, 14305. Tel: 800-757-4868. Email: dwc@mavc.com.
Journal
JAMA