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

Julie O. Culver, Deborah J. MacDonald, Andrea A. Thornton, Sharon R. Sand, Marcia Grant, Deborah J. Bowen, Harry Burke, Nellie Garcia, Kelly A. Metcalfe, Jeffrey N. Weitzel

Research output: Contribution to journalArticlepeer-review

31 Scopus citations

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 languageEnglish
Pages (from-to)294-307
Number of pages14
JournalJournal of Genetic Counseling
Volume20
Issue number3
DOIs
StatePublished - Jun 2011
Externally publishedYes

Keywords

  • BRCA1
  • BRCA2
  • Breast cancer
  • Decision aid
  • Decision-making
  • Genetic counseling
  • Mastectomy
  • Oophorectomy

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