Development and testing of a decision aid for breast cancer prevention for women with a BRCA1 or BRCA2 mutation

• Published in: Clinical genetics 2007-09, Vol.72 (3), p.208-217
• Main Authors: Metcalfe, KA, Poll, A, O'Connor, A, Gershman, S, Armel, S, Finch, A, Demsky, R, Rosen, B, Narod, SA
• Format: Article
• Language: English
• Subjects: Biological and medical sciences; BRCA1; BRCA2; breast cancer prevention; Breast Neoplasms - genetics; Breast Neoplasms - prevention & control; decision aid; Decision Support Techniques; Female; Fundamental and applied biological sciences. Psychology; General aspects. Genetic counseling; Genes, BRCA1; Genes, BRCA2; Genetic Counseling; Genetics of eukaryotes. Biological and molecular evolution; Gynecology. Andrology. Obstetrics; Humans; Mammary gland diseases; Medical genetics; Medical sciences; Molecular and cellular biology; Mutation; Pilot Projects; Tumors
• ISSN: 0009-9163; 1399-0004
• DOI: 10.1111/j.1399-0004.2007.00859.x

For women who carry a mutation in BRCA1 or BRCA2, the risk of breast cancer is up to 87% by the age of 70. There are options available to reduce the risk of breast cancer; however, each option has both risks and benefits, which makes decision making difficult. The objective is to develop and pilot test a decision aid for breast cancer prevention for women with a BRCA1 or BRCA2 mutation. 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. After using the decision aid, there was a significant decline in mean decisional conflict scores (p = 0.001), a significant improvement in knowledge scores (p = 0.004), and fewer women uncertain about prophylactic mastectomy (p = 0.003) and prophylactic oophorectomy (p = 0.009). Use of the decision aid decreased decisional conflict to levels suggestive of implementation of a decision. In addition, knowledge levels increased and choice predisposition changed with fewer women being uncertain about each option. This 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.