University of Toronto

Funded By: 

Canadian Institutes of Health Research, Canadian Breast Cancer Research Alliance

Status: 

Completed

Summary:

For women who carry a mutation in BRCA1 or BRCA2, the risk of developing breast cancer is up to 87% by the age of 70. While there are options available to reduce the risk of breast cancer, each option has both risks and benefits, which makes decision making difficult. The objectives of the decision aid are to increase knowledge about breast cancer prevention options, to reduce decisional conflict, to reduce psychological distress related to having a BRCA1 or BRCA2 mutation, and to improve women’s satisfaction with decision making about breast cancer prevention.

The decision aid was developed and evaluated in three stages. In the first stage, the decision aid was developed and reviewed by cancer genetics experts. The second stage was a review of the decision aid by women with a BRCA1 or BRCA2 mutation for acceptability and feasibility. The final stage was a pre-test–post-test evaluation of the decision aid. Twenty-one women completed the pre-test questionnaire and 20 completed the post-test questionnaire.

This Decision Aid is now being tested in a Randomized Control Trial to evaluate the effectiveness of this tool for breast cancer prevention in 150 women.  This study has significant clinical implications as it implies that with greater uptake of cancer prevention options by women with a BRCA1 or BRCA2 mutation, fewer women will develop and/or die of hereditary breast cancer.

Publications: 

Metcalfe, K, Poll, A., O’Connor, A., Gershman, S., Armel, S., Finch, A., Demsky, R., Rosen, B., & Narod, S. (2007).  Development and testing of a decision aid for breast cancer prevention for women with a BRCA1 or BRCA2 mutation.  Clinical Genetics, 72: 208-217.