A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk |
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| Authors: | Claire E. Wakefield Bettina Meiser Judi Homewood Michelle Peate Alan Taylor Elizabeth Lobb Judy Kirk Mary-Anne Young Rachel Williams Tracy Dudding Kathy Tucker |
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| Affiliation: | (1) Department of Psychology, Macquarie University, Sydney, NSW, Australia;(2) Psychosocial Research Group (PRG), Department of Medical Oncology, Prince of Wales Hospital, Dickinson 3, Randwick, Sydney, NSW, 2031, Australia;(3) School of Psychiatry, University of New South Wales, Randwick, Sydney, NSW, Australia;(4) WA Centre for Cancer & Palliative Care, School of Nursing, Midwifery and Postgraduate Medicine, Edith Cowan University, Perth, WA, Australia;(5) Medical Psychology Research Unit, The University of Sydney, Camperdown, NSW, Australia;(6) Familial Cancer Service, Westmead Hospital, Westmead, NSW, Australia;(7) Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia;(8) Family Cancer Clinic, St Vincent’s Hospital, Darlinghurst, Sydney, NSW, Australia;(9) Hunter Family Cancer Service, Hunter New England Health, Newcastle, NSW, Australia;(10) Prince of Wales Clinical School, University of NSW, Randwick, Sydney, NSW, Australia |
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| 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. 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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| Keywords: | Decision aid Patient education Genetic testing Hereditary breast cancer Hereditary ovarian cancer |
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