Women's Decisions Regarding Tamoxifen for Breast Cancer Prevention: Responses to a Tailored Decision Aid

Ann Arbor VA HSR&D, Center for Clinical Management Research, Ann Arbor, MI, USA.
Breast Cancer Research and Treatment (Impact Factor: 3.94). 11/2009; 119(3):613-20. DOI: 10.1007/s10549-009-0618-4
Source: PubMed


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 > or = 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.

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    • "Nine studies employed decision aids or shared decision-making (SDM) as the principal component of their interventions (Table 3). [51] [52] [53] [54] [55] [56] [57] [58] [59]. These interventions were most often delivered by physicians during face-to-face health care encounters and were designed to provide patients with information about potential treatment choices and their associated benefits and risks. "
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    ABSTRACT: Objective Patient-centered approaches to improving medication adherence hold promise, but evidence of their effectiveness is unclear. This review reports the current state of scientific research around interventions to improve medication management through four patient-centered domains: shared decision-making, methods to enhance effective prescribing, systems for eliciting and acting on patient feedback about medication use and treatment goals, and medication-taking behavior. Methods We reviewed literature on interventions that fell into these domains and were published between January 2007 and May 2013. Two reviewers abstracted information and categorized studies by intervention type. Results We identified 60 studies, of which 40% focused on patient education. Other intervention types included augmented pharmacy services, decision aids, shared decision-making, and clinical review of patient adherence. Medication adherence was an outcome in most (70%) of the studies, although 50% also examined patient-centered outcomes. Conclusions We identified a large number of medication management interventions that incorporated patient-centered care and improved patient outcomes. We were unable to determine whether these interventions are more effective than traditional medication adherence interventions. Practice Implications Additional research is needed to identify effective and feasible approaches to incorporate patient-centeredness into the medication management processes of the current health care system, if appropriate.
    Patient Education and Counseling 09/2014; 97(3). DOI:10.1016/j.pec.2014.08.021 · 2.20 Impact Factor
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    • "Women judged to be at high risk , based on their records , were contacted and 632 postmenopausal women received an explanation of the pros and cons of the use of tamoxifen and raloxifene for prevention of breast cancer . None of the women started tamoxifen and two took raloxifene suggesting that this method of access to high - risk women may not be effective ( Fagerlin et al , 2010 ) . Another approach to assess uptake has involved the biannual US National Health Information Surveys whereby the health of a population subgroup is evaluated by trained surveyors . "
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    ABSTRACT: Background: Randomised trials of tamoxifen versus placebo indicate that tamoxifen reduces breast cancer risk by approximately 33%, yet uptake is low. Approximately 10% of women in our clinic entered the IBIS-I prevention trial. We assess the uptake of tamoxifen in a consecutive series of premenopausal women not in a trial and explore the reasons for uptake through interviews. Methods: All eligible women between 33 and 46 years at ⩾17% lifetime risk of breast cancer and undergoing annual mammography in our service were invited to take a 5-year course of tamoxifen. Reasons for accepting (n=15) or declining (n=15) were explored using semi-structured interviews. Results: Of 1279 eligible women, 136 (10.6%) decided to take tamoxifen. Women >40 years (74 out of 553 (13.4%)) and those at higher non-BRCA-associated risk were more likely to accept tamoxifen (129 out of 1109 (11.6%)). Interviews highlighted four themes surrounding decision making: perceived impact of side effects, the impact of others' experience on beliefs about tamoxifen, tamoxifen as a ‘cancer drug', and daily reminder of cancer risk. Conclusions: Tamoxifen uptake was similar to previously ascertained uptake in a randomised controlled trial (IBIS-I). Concerns were similar in women who did or did not accept tamoxifen. Decision making appeared to be embedded in the experience of significant others.
    British Journal of Cancer 03/2014; 110(7). DOI:10.1038/bjc.2014.109 · 4.84 Impact Factor
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    • "Third, while raloxifene was originally designed to treat osteoporosis, tamoxifen was designed to prevent recurrence of breast cancer and, therefore, may have negative connotations [13]. Fourth, fear of potential side effects may inhibit positive attitudes toward taking chemoprevention drugs [5], including a perception that the potential risks (that is, increased risks of endometrial cancer, pulmonary embolism, stroke, deep vein thrombosis, cataracts, hormonal symptoms and sexual problems) outweigh the potential benefits of the drugs (that is, reduced risks of breast cancer and osteoporosis) [4,5,7,10,12,14]. Finally, many people, particularly when healthy, are opposed to taking preventive drugs on a regular basis [5,12]. "
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    ABSTRACT: Tamoxifen and raloxifene are chemopreventive drugs that can reduce women's relative risk of primary breast cancer by 50%; however, most women eligible for these drugs have chosen not to take them. The reasons for low uptake may be related to women's knowledge or attitudes towards the drugs. We aimed to examine the impact of an online breast cancer chemoprevention decision aid (DA) on informed intentions and decisions of women at high risk of breast cancer. We conducted a Randomized Clinical Trial, assessing the effect of a decision aid about breast cancer chemoprevention on informed choices about chemoprevention. Women (n=585) aged 46 to 74 years old completed online baseline, post-test, and 3-month follow-up questionnaires. Participants were randomly assigned to either an intervention group, a standard control group that answered questions about chemoprevention at baseline, or a 3-month control group that did not answer questions about chemoprevention at baseline. The main outcome measures were whether women's intentions and decisions regarding chemoprevention drugs were informed, and whether women who viewed the DA were more likely to make informed decisions than women who did not view the DA, using a dichotomous composite variable "informed choice" [yes/no] to classify informed decisions as those reflecting sufficient knowledge and concordance between a woman's decision and relevant attitudes. Analyses showed that more intervention than standard control participants (52.7% vs. 5.9%) made informed decisions at post-test, P<0.001. At the 3-month follow-up, differences in rates of informed choice between intervention (16.9%) and both control groups (11.8% and 8.0%) were statistically non-significant, P=0.067. The DA increased informed decision making about breast cancer chemoprevention, although the impact on knowledge diminished over time. This study was not designed to determine how much knowledge decision makers must retain over time. Examining informed decisions increases understanding of the impact of DAs. A standard for defining and measuring sufficient knowledge for informed decisions is needed. Trial registration:; number NCT00967824.
    Breast cancer research: BCR 09/2013; 15(5):R74. DOI:10.1186/bcr3468 · 5.49 Impact Factor
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