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Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer
Author(s) -
Culver Julie O.,
MacDonald Deborah J.,
Thornton Andrea A.,
Sand Sharon R.,
Grant Marcia,
Bowen Deborah J.,
Burke Harry,
Garcia Nellie,
Metcalfe Kelly A.,
Weitzel Jeffrey N.
Publication year - 2011
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-011-9350-4
Subject(s) - breast cancer , medicine , genetic counseling , focus group , ranking (information retrieval) , stakeholder , decision aids , surgical oncology , decision support system , family medicine , oncology , cancer , gynecology , alternative medicine , public relations , computer science , pathology , genetics , biology , marketing , machine learning , artificial intelligence , political science , business
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.