"I'm going to die of something anyway": women's perceptions of tamoxifen for breast cancer risk reduction.
ABSTRACT To investigate how ethnically diverse women who are eligible for tamoxifen prophylaxis because of their breast cancer risk decide about tamoxifen use for risk reduction.
A qualitative intervention pilot study used focus groups to discuss the use of tamoxifen and to identify the concerns of ethnically diverse women about the preventive use of this drug. Focus group discussion involved exploration of the benefits and risks of tamoxifen prophylaxis, presentation of a standardized educational intervention, and focused discussion on attitudes about tamoxifen for prevention. Prominent themes emerged from iterative review of focus group transcripts.
Fear of breast cancer was not prominent, and participants were less inclined to take tamoxifen as preventive therapy after receiving information. Decisions were based on participants' understandings of competing risks and benefits. Specifically, participants expressed limited willingness to take medication with potential serious side effects for risk reduction and were unwilling to discontinue hormone replacement therapy. Uneasiness about the reliability of scientific studies surfaced in the focus groups comprised of White and Latina women. African-American women described faith as important to prevention.
Women were wary of taking a drug for a disease they might not develop. Women felt they had options other than tamoxifen to reduce their risk of breast cancer, including early detection, diet, faith, and complementary and alternative therapies.
SourceAvailable from: Jennifer McClure[Show abstract] [Hide abstract]
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: ClinicalTrials.gov; number NCT00967824.Breast cancer research: BCR 09/2013; 15(5):R74. DOI:10.1186/bcr3468 · 5.88 Impact Factor
[Show abstract] [Hide abstract]
ABSTRACT: Two selective estrogen receptor modulators, tamoxifen and raloxifene, have been shown in randomized clinical trials to reduce the risk of developing primary invasive breast cancer in high-risk women. In 1998, the U.S. Food and Drug Administration (FDA) used these studies as a basis for approving tamoxifen for primary breast chemoprevention in both premenopausal and postmenopausal women at high risk. In 2007, the FDA approved raloxifene for primary breast cancer chemoprevention for postmenopausal women. Data from the year 2010 National Health Interview Survey were analyzed to estimate the prevalence of tamoxifen and raloxifene use for chemoprevention of primary breast cancers among U.S. women. Prevalence of use of chemopreventive agents for primary tumors was 20,598 (95 % CI, 518-114,864) for U.S. women aged 35-79 for tamoxifen. Prevalence was 96,890 (95 % CI, 41,277-192,391) for U.S. women aged 50-79 for raloxifene. Use of tamoxifen and raloxifene for prevention of primary breast cancers continues to be low. In 2010, women reporting medication use for breast cancer chemoprevention were primarily using the more recently FDA approved drug raloxifene. Multiple possible explanations for the low use exist, including lack of awareness and/or concern about side effects among primary care physicians and patients.Breast Cancer Research and Treatment 05/2012; 134(2):875-80. DOI:10.1007/s10549-012-2089-2 · 4.47 Impact Factor
[Show abstract] [Hide abstract]
ABSTRACT: African American women suffer a disproportionately high burden of basal-like breast cancer, an aggressive subtype that has no targeted therapy. While epidemiologic research has identified key prevention strategies, little is known about how best to communicate risk to this population. This study explored women's knowledge, beliefs, and attitudes about breast cancer to learn about risk perceptions. Six focus groups were conducted in North Carolina with 57 women (ages 18-49). Age, race (especially perceptions of cancer as a "White disease"), and lack of family history of breast cancer were all shown to contribute to women's perceptions of low breast cancer susceptibility. Perceptions of low risk were also attributed to conflicting risk information from family, media, and health providers. Women had little to no knowledge of breast cancer subtypes, and emphasized that health communications should be personally relevant, culturally appropriate, and convenient. These findings will assist in developing health communication tools that encourage prevention.Journal of Health Care for the Poor and Underserved 01/2013; 24(2):753-767. DOI:10.1353/hpu.2013.0082 · 1.10 Impact Factor