Decision aids for familial breast cancer: exploring women's views using focus groups

Background There is increasing need for accessible information about familial breast cancer for those facing complex decisions around genetic testing, screening and treatment. Information currently includes leaflets and computerized decision aids, offering interactive interfaces to clarify complex choices. Objective Exploration of users’ views and reactions to three decision aids for genetic testing for breast cancer using focus groups. Setting A regional cancer genetics service in the UK. Participants Women over 18 years of age who had been referred to Cancer Genetics Service for Wales (CGSW) and had received a risk assessment for familial breast cancer. Methods Qualitative study involving one pilot and six extended focus groups with 39 women at high, moderate and population risk. Two CD-ROMs and one paper-based aid evaluated for: clarity of presentation, ease of handling, emotive response, increased knowledge and greater informed choice. Results Women reported variable preferences for different types of decision aids and mixed emotions, indicating the sensitivity of raising issues in decision support tools, lack of consensus over the most appropriate aid and no systematic differences between risk groups. Women remarked that aids increased their knowledge, particularly about breast cancer genes and risk and wanted a decision aid designed within the context of the NHS, in both paper-based and CD-ROM formats from an authoritative source. Mixed views about presentation styles suggest decision aids would be most effective with a user-selected range of formats. Conclusions Decision aid development should be informed by users and should meet the needs of those concerned about their risk of breast cancer in the UK. Without such aids, patients will continue to search for information from a variety of sources of varying quality