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

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

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Breast Neoplasms / genetics
  • Breast Neoplasms / psychology*
  • Breast Neoplasms / surgery
  • Decision Support Techniques*
  • Female
  • Focus Groups
  • Genes, BRCA1*
  • Genes, BRCA2*
  • Genetic Carrier Screening*
  • Genetic Counseling
  • Humans
  • Mastectomy
  • Ovariectomy
  • Risk Reduction Behavior