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A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk

  • Preclinical Study/Clinical Trial/Epidemiology/Invited Commentary
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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.

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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.

Author information

Authors and Affiliations

  1. Department of Psychology, Macquarie University, Sydney, NSW, Australia

    Claire E. Wakefield, Judi Homewood & Alan Taylor

  2. Psychosocial Research Group (PRG), Department of Medical Oncology, Prince of Wales Hospital, Dickinson 3, Randwick, Sydney, NSW, 2031, Australia

    Claire E. Wakefield, Bettina Meiser, Michelle Peate & Kathy Tucker

  3. School of Psychiatry, University of New South Wales, Randwick, Sydney, NSW, Australia

    Claire E. Wakefield & Bettina Meiser

  4. WA Centre for Cancer & Palliative Care, School of Nursing, Midwifery and Postgraduate Medicine, Edith Cowan University, Perth, WA, Australia

    Elizabeth Lobb

  5. Medical Psychology Research Unit, The University of Sydney, Camperdown, NSW, Australia

    Elizabeth Lobb

  6. Familial Cancer Service, Westmead Hospital, Westmead, NSW, Australia

    Judy Kirk

  7. Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Mary-Anne Young

  8. Family Cancer Clinic, St Vincent’s Hospital, Darlinghurst, Sydney, NSW, Australia

    Rachel Williams

  9. Hunter Family Cancer Service, Hunter New England Health, Newcastle, NSW, Australia

    Tracy Dudding

  10. Prince of Wales Clinical School, University of NSW, Randwick, Sydney, NSW, Australia

    Kathy Tucker

Authors
  1. Claire E. Wakefield
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  2. Bettina Meiser
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  7. Judy Kirk
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  9. Rachel Williams
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Consortia

the AGenDA Collaborative Group

Corresponding author

Correspondence to Claire E. Wakefield.

Additional information

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

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