Development and Evaluation of a Decision Aid for B... [J Genet Couns. 2011] - PubMed result

J Genet Couns. 2011 Mar 3. [Epub ahead of print]

Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer.
Culver JO, Macdonald DJ, Thornton AA, Sand SR, Grant M, Bowen DJ, Burke H, Garcia N, Metcalfe KA, Weitzel JN.

Division of Clinical Cancer Genetics, Department of Population Sciences, City of Hope Comprehensive Cancer Center, 1500 East Duarte Road Mod 173, Duarte, CA, 91010-3000, USA, jculver@coh.org.


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 [PubMed - as supplied by publisher]

Development and Evaluation of a Decision Aid for B... [J Genet Couns. 2011] - PubMed result