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J Genet Couns. 2011 Jun;20(3):294-307. doi: 10.1007/s10897-011-9350-4. Epub 2011 Mar 3.

Development and evaluation of a decision aid for BRCA carriers with breast cancer.

Author information

1
Division of Clinical Cancer Genetics, Department of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA 91010-3000, USA. jculver@coh.org

Erratum in

  • J Genet Couns. 2013 Jun;22(3):406.

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.

PMID:
21369831
PMCID:
PMC3531556
DOI:
10.1007/s10897-011-9350-4
[Indexed for MEDLINE]
Free PMC Article

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