Abstract
BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA's decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.
Original language | English |
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Pages (from-to) | 294-307 |
Number of pages | 14 |
Journal | Journal of Genetic Counseling |
Volume | 20 |
Issue number | 3 |
DOIs | |
State | Published - Jun 2011 |
Externally published | Yes |
Keywords
- BRCA1
- BRCA2
- Breast cancer
- Decision aid
- Decision-making
- Genetic counseling
- Mastectomy
- Oophorectomy