Research themes and projects at the Centre for Womens Health, Gender and Society
Project title
A qualitative study of the provision of risk management information to women at high genetic risk of breast cancer
Major research theme
Investigators
- Dr Louise Keogh, CWHGS, School of Population Health, The University of Melbourne
- A/ Prof Kelly-Anne Phillips, Peter McCallum Cancer Institute
Funding
- Part of NHMRC Research Training Fellowship (Dr Louise Keogh, part-time), 2005-2009
Summary
Unaffected women at high risk of breast cancer have several options for risk management including risk-reducing surgery, chemoprevention and cancer screening. Prophylactic mastectomy provides the most protection, but is the least acceptable procedure, and Tamoxifen was licensed for use as a chemopreventive agent in the US in 1998 but is not licensed for use in this way in Australia or New Zealand. Although it can be prescribed ‘off-label’ (for a use other than that for which it was intended) it is thought to be infrequently prescribed in this way. A study of risk management practices among mutation carriers three years after entry into the kCon Fab study in Australia found that a minority had undergone risk-reducing surgery, only 1 of the 142 participants was taking tamoxifen and a substantial minority were not undergoing regular screening. While family cancer clinics are an important source of information about risk management strategies for carriers and those with high familial risk of breast cancer in Australia, there is evidence that only half of genetic counselling discussions include a discussion about risk-reducing surgery and a suspicion that clinicians are reluctant to talk to carriers about the use of chemoprevention. The purpose of this study is to determine family cancer clinicians’ perception of chemoprevention and risk reducing surgery, and the principles that they use in discussing these (and other) risk management strategies with their clients.
Focus groups will be conducted with family cancer clinic clinicians from the largest clinics in each of Victoria, New South Wales and South Australia. Discussion will focus on the subject of risk management for high risk women. Data will be analysed thematically, to determine the key themes in the provision of advice about risk reduction by family cancer clinic clinicians. On the basis of the analysis of focus group data, it will be possible to suggest measures to address barriers to the discussion of appropriate risk management strategies with women at high risk of breast cancer.
This study has been completed and findings have been submitted to a journal.