"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.
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ABSTRACT: Women at high risk of breast cancer face the complex decision of whether to take tamoxifen or raloxifene for breast cancer chemoprevention. We investigated what is known about decisions of women regarding chemoprevention. Using MEDLINE, CINAHL, and PSYCINFO, plus reviewing reference lists of relevant articles, in December 2009 we identified 13 studies that addressed patient decisions about breast cancer chemoprevention, were published in 1995 or later, were peer-reviewed primary clinical studies, and reported rates at which participants showed interest in (hypothetical uptake) or accepted (real uptake) chemoprevention medications. Nine studies provided information about hypothetical breast cancer chemoprevention decisions (mean uptake rate, 24.7%) and five provided information about real decisions (mean uptake rate, 14.8%). The range of rates was wide, and each of the hypothetical uptake studies assessed interest differently. A logistic regression model found significant correlation with uptake of decision type (hypothetical versus real, odds ratio [OR] = 1.65; 95% CI, 1.26 to 2.16), educational or decision support intervention (provided v not, OR = 0.21; 95% CI, 0.17 to 0.27), and cohort risk for breast cancer (high-risk v general population, OR = 0.65; 95% CI, 0.56 to 0.75). Perceived vulnerability to breast cancer was consistently correlated with increased uptake, and concern for adverse effects was correlated with reduced uptake. All studies used a correlational/descriptive design, and most studies used convenience sampling strategies. Breast cancer chemoprevention uptake rates are low and variation is wide. Hypothetical uptake rates are higher than real uptake, and interventions markedly reduce uptake. Research is needed that uses reproducible sampling methods and examines decision support strategies that lead to quality decisions.Journal of Clinical Oncology 06/2010; 28(18):3090-5. · 17.88 Impact Factor
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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. · 4.47 Impact Factor
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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. · 1.10 Impact Factor