Abstract
Purpose
To measure the effectiveness of a tailored decision aid (DA) designed to help women make informed decisions about genetic testing for breast/ovarian cancer risk.
Methods
A total of 145 women were randomized to receive the DA or a control pamphlet at the end of their first genetic counseling consultation. Of these, 120 (82.8%) completed two questionnaires, 1 week and 6 months post-consultation.
Results
While the DA had no effect on informed choice, post-decisional regret or actual genetic testing decision, the trial showed that women who received the DA had higher knowledge levels and felt more informed about genetic testing than women who received the control pamphlet (χ2(2) = 6.82; P = 0.033; χ2(1) = 4.86; P = 0.028 respectively). The DA also helped women who did not have blood drawn at their first consultation to clarify their values with regards to genetic testing (χ2(1) = 5.27; P = 0.022). Women who received the DA were less likely to share the information with other family members than women in the control condition (χ2(1) = 8.78; P = 0.003).
Conclusions
Decision aids are an effective decision-support strategy for women considering genetic testing for breast/ovarian cancer risk, and are most effective before the patient has made a decision, which is generally at the point of having blood drawn.
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Acknowledgements
We would like to thank our consumer representative, Sandra Tanner, as well as each of the clinicians who reviewed numerous drafts of the DAs and recruited their patients for the study. We would also like to thank the women who completed the questionnaires. The study was funded by a project grant from the Cancer Council of New South Wales (Project Grant 300441). Ms. Wakefield is supported by an Australian Postgraduate Award. Dr. Meiser is supported by a Career Development Award from the National Health and Medical Research Council of Australia (ID 350989). The authors have no conflicts of interest to declare.
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AGenDA Collaborative group
The members of the Australian GENetic testing Decision Aid Collaborative Group are in alphabetical order of group or institution: Centre for Genetics Education, Sydney (K. Barlow-Stewart); Familial Cancer Service, Westmead Hospital, Sydney (G. Fenton, A. Goodwin, P. Zodgekar); Hereditary Cancer Clinic, Prince of Wales Hospital, Sydney (L. Andrews, J. Koeler, A. Overkov, J. Tyler, B. Warner); Hunter Genetics, Newcastle (M. Gleeson, C. Groombridge, S. O’Donnell, A. Spigelman); Macquarie University (C. McMahon); Peter McCallum Cancer Institute, Melbourne (L. Hossack, M. Kentwell); Royal Melbourne Hospital, Melbourne (C. Aragona, R. D’Souza, C. Gaff, L. Hodgkin); St Vincent’s Hospital, Sydney (R. Ward), University of Sydney (P. Butow, H. Davey).
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Wakefield, C.E., Meiser, B., Homewood, J. et al. A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk. Breast Cancer Res Treat 107, 289–301 (2008). https://doi.org/10.1007/s10549-007-9539-2
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DOI: https://doi.org/10.1007/s10549-007-9539-2