Women’s decisions regarding tamoxifen for breast cancer prevention: responses to a tailored decision aid
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Tamoxifen reduces primary breast cancer incidence, yet causes serious side effects. To date, few women with increased breast cancer risk have elected to use tamoxifen for chemoprevention. The objective of the study was to determine women’s knowledge of and attitudes toward tamoxifen following exposure to a tailored decision aid (DA). A total of 632 women with a 5-year risk of breast cancer ≥1.66% (Mean = 2.56, range = 1.7–17.3) were recruited from two healthcare organizations. Participants viewed an online DA that informed them about their 5-year risk of breast cancer and presented individually tailored content depicting the risks/benefits of tamoxifen prophylaxis. Outcome measures included behavioral intentions (to seek additional information about tamoxifen, to talk to a physician about tamoxifen, and to take tamoxifen); knowledge; and perceived risks and benefits of tamoxifen. After viewing the DA, 29% of participants said they intended to seek more information or talk to their doctor about tamoxifen, and only 6% believed they would take tamoxifen. Knowledge was considerable, with 63% of women answering at least 5 of 6 knowledge questions correctly. Participants were concerned about the risks of tamoxifen, and many believed that the benefits of tamoxifen did not outweigh the risks. This study is the largest to date to test women’s preferences for taking tamoxifen and one of the largest to have tested the impact of a tailored DA. After viewing the DA, women demonstrated good understanding of tamoxifen’s risks and benefits, but most were not interested in taking tamoxifen for breast cancer chemoprevention.
KeywordsDecision aids Patient education Tamoxifen Breast cancer prevention
We thank Drs Victor Strecher, Priti Shah, and Mick Couper for their assistance with study design. The Center for Heath Communication Research (especially Michael Nowak) did an excellent job turning our DA into a well-designed and easily navigated web site. We also thank Roy Pardee and Rick Krajenta for their assistance with compiling the databases of eligible participants. We express our gratitude to the Department of Radiology at Henry Ford Health System, particularly Dr. Matthew Burke, for their help in identifying eligible patients. Finally, we are very grateful to all the women who participated in this study. Financial support for this study was provided by a grant from the National Institutes for Health (P50 CA101451). Drs. Fagerlin and Smith were supported by MREP early career awards from the U.S. Department of Veterans Affairs. Dr. Zikmund-Fisher is supported by a career development award from the American Cancer Society. The funding agreements insured the authors’ independence in designing the study, interpreting the data, and publishing the report.
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