Breast Cancer Risk & Genetic Testing

Highlights
Program Title Breast Cancer Risk & Genetic Testing
Purpose Designed to enhance knowledge in the decision making process for genetic testing for breast cancer susceptibility. (2004)
Program Focus Awareness building and Improve decision making
Population Focus Women
Topic Informed Decision Making, Public Health Genomics
Age Adults (40-65 years), Older Adults (65+ years), Young Adults (19-39 years)
Gender Female
Race/Ethnicity Black, not of Hispanic or Latino origin, Hispanic or Latino, White, not of Hispanic or Latino origin
Setting Clinical, Suburban, Urban/Inner City
Origination United States
Funded by NCI (Grant number(s): CA84770, CA70638)
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The Need
In recent years, developments in medical testing technology and widespread news coverage about these developments have led to increased testing for conditions such as breast cancer susceptibility. Professional organizations recommend that people who want genetic testing should be referred to genetic counselors or other specialists in this area. However, there are only about 400 genetic counselors practicing in the United States, and some regions have no medical professionals with this expertise. As a result, the demand for education and counseling about inherited cancer risk may soon outstrip the supply of cancer genetic specialists. Thus, there is a need to find effective ways to deliver information about breast cancer risk and genetic testing.
The Program
Breast Cancer Risk and Genetic Testing is an interactive, multimedia computer-based decision aid to educate individuals and help facilitate informed decision-making about genetic testing for breast cancer susceptibility. The program is designed to educate women about breast cancer, heredity, the benefits and limitations of genetic testing, and help women make informed decisions about genetic testing by addressing topics such as who is at risk for breast cancer, how genes affect cancer risk, and the pros and cons of testing. The Breast Cancer Risk and Genetic Testing CD-ROM is self-paced, user-driven, and suitable for women of all ages and educational levels. No prior experience with computers is required.
Community Preventive Services Task Force Finding
Guide to Community Preventive Services This program uses the following intervention approach for which the Community Preventive Services Task Force finds insufficient evidence: interventions promoting informed decision making for cancer screening (Informed Decision Making). Insufficient evidence means the available studies do not provide sufficient evidence to determine if the intervention is or is not effective. This does not mean that the intervention does not work. It means that additional research is needed to determine whether the intervention is effective.

To expand understanding of this intervention category consider communicating with members from NCI's Research to Reality (R2R) community of practice who may be able to help you with your research efforts. Following is a link to start an online discussion with the R2R community of practice, after completing registration on the R2R site: https://researchtoreality.cancer.gov/discussions.

Time Required
The CD-ROM program takes about 45-60 minutes to complete. The CD-ROM is currently available for distribution. No specialized training is needed to implement the program.
Intended Audience
The Breast Cancer Risk and Genetic Testing decision aid is suitable for women 18 years or older and intended for all women regardless of cancer risk.
Suitable Settings
The program is suitable for implementation in a primary care, specialized medical care, or other setting involving cancer risk and genetic testing.
Required Resources
The Breast Cancer Risk and Genetic Testing CD-ROM is available through Medical Audio Visual Communications, Inc. The program may be appropriate as a stand-alone resource for educating women at low risk for breast cancer. However, for high-risk women, it is only appropriate as a supplement to genetic counseling.
About the Study

A randomized multi-site study was conducted at six study sites located in Pennsylvania, Texas, and Illinois. The study compared the effectiveness of standard one-on-one genetic counseling versus education by a computer program. The computer-based educational intervention was followed by genetic counseling. Randomized multi-site study participants were predominantly White, relatively young (mean age of 44), well educated, and comfortable using the computer. About 56 percent to 61 percent of the participants had low risk for carrying the BRCA 1/2 mutation; 29 percent to 35 percent had a personal history of breast cancer.

Computer group data presented below were collected before the group received counseling. Results were reported separately for low- and high-risk women.

Key Findings
  • Overall, an interactive computer program followed by genetic counseling was shown to be more effective than standard genetic counseling for increasing knowledge of breast cancer and genetic testing among women at low risk of carrying BRCA1 or BRCA2 mutation. Genetic counseling was more effective than the computer program at reducing women's anxiety and facilitating more accurate risk perception.

  • The randomized multi-site study indicated that the computer program has the potential to stand alone as an educational intervention for low-risk women, but should be used only as a supplement to genetic counseling for high-risk women.

  • Among low-risk women who received counseling only, the percent correct on the knowledge measure increased an average of 29 percent between baseline and completion of genetic counseling. Knowledge increase was 38 percent (p=.03) among low-risk women who had also used the computer program.

Graph of Study Results

  • Among high-risk women, knowledge increase was not significantly different between the counseling only and computer groups.

  • Among low-risk women, all measures of risk perception decreased more for the counseling only group than for the computer group.

  • Intention to undergo testing decreased significantly among low-risk but not high-risk women. The change was greater among the counseling group (p<.001) than the computer group (p=.05). The program informs women that the test is expensive and usually not covered by insurance. The program also describes the advantages and disadvantages of genetic testing, for which the advantages apply more to women with personal or family history of breast cancer.

Graph of Study Results

  • Genetic counselors have indicated that a client's use of the computer program shortened counseling sessions and allowed counselors to shift the focus away from basic education and toward personal risk and decision-making.

  • Both low- and high-risk women who had received counseling indicated less decisional conflict about genetic testing than the computer group. Low-risk women in the counseling group also indicated higher satisfaction with their decision than women in the computer group.

  • State-anxiety scores for the counselor group decreased significantly after counseling among low- and high-risk participants. Anxiety did not change significantly after computer use for either risk group.

  • At post-intervention, the overall mean scores for decisional conflict were low in both groups. When analyzed by high and low-risk status, no significant difference was observed between the counselor and computer groups.
Publications
Primary
Secondary

Green, M. J. (2000). Commentary: Computers and genetic counseling: Time for a dialogue?. Journal of Genetic Counseling, 9 (4), 359-361.

Green, M. J., Biesecker, B. B., McInerney, A. M., Mauger, D., & Fost, N. (2001). An interactive computer program can effectively educate patients about genetic testing for breast cancer susceptibility. American Journal of Medical Genetics, 103, 16-23.

Green, M. J., & Botkin, J. R. (2003). "Genetic Exceptionalism" in medicine: Clarifying the differences between genetic and nongenetic tests. Annals of Internal Medicine, 138, 571-575.

Green, M. J., & Fost, N. (1997). An interactive computer program for educating and counseling patients about genetic susceptibility to breast cancer. Journal of Cancer Education, 12(4), 204-208.

Green, M. J., & Fost, N. (1997). Issues in genetic testing: Who should provide genetic education prior to gene testing? Computers and other methods for improving patient understanding. Genetic Testing, 1(2), 131-136.

Green, M. J., McInerney, A. M., Biesecker, B. B., & Fost, N. (2001). Education about genetic testing for breast cancer susceptibility: Patient preferences for a computer program or genetic counselor. American Journal of Medical Genetics, 103, 24-31.

Green,M.J.; Peterson,S.K.; Baker,M.W.; Friedman,L.C.; Harper,G.R.; Rubinstein,W.S.; Peters,J.A.; Mauger,D.T.; . (2005). Use of an educational computer program before genetic counseling for breast cancer susceptibility: effects on duration and content of counseling sessions. Genetics in Medicine : Official Journal of the American College of Medical Genetics, 7(4), 221-229.

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Updated: 06/11/2012
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