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1 Division of General Internal Medicine; Department of Medicine, Medical Effectiveness Research Center for Diverse Populations, 2 University of California, San Francisco Comprehensive Cancer Center; 3 General Internal Medicine Section, Department of Veterans' Affairs, Department of Epidemiology and Biostatistics; Department of Medicine, University of California, San Francisco; 4 Division of Research, Kaiser Permanente Northern California, Oakland, California; and 5 Division of General Medicine and Primary Care, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts
Requests for reprints: Celia Patricia Kaplan, Division of General Internal Medicine, Department of Medicine, University of California San Francisco, 3333 California Street, Room 335-G, San Francisco, CA 94143-0856. Phone: 415-502-5601; Fax: 415-502-8291. E-mail: Celia.Kaplan{at}ucsf.edu
| Abstract |
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Methods: We conducted telephone interviews with 1,700 women ages 40 to 74, from four racial/ethnic groups, without prior history of breast cancer, who received mammograms at one of five mammography facilities in San Francisco. Main outcomes measured included recognition of tamoxifen, raloxifene, genetic testing, and prophylactic surgery. Global indicators (recognition of any therapy, discussion of breast cancer risk) were developed from original outcome measures and analyzed using logistic regression.
Results: Multivariate analyses indicate that race/ethnicity and interview language affected recognition of therapies and discussion of risk. White women were more likely than all other women to recognize any therapy and more likely than Asian-Americans to discuss risk. Women at high risk, who had a prior abnormal mammogram, who perceived themselves to be at high risk, or who were exposed to breast health information were more likely to discuss risk.
Conclusions: Women are aware of preventive therapies, although discussion and use is limited. Interventions to increase use of therapies should focus on those at high risk. (Cancer Epidemiol Biomarkers Prev 2006;15(1):1626)
| Introduction |
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11% (1). Advances in breast cancer genetic predisposition screening (2, 3), chemoprevention therapies (3), and surgical procedures (4) have led to recommendations in general clinical practice. Although the gap between breast cancer screening for minority populations and Whites has been narrowed in recent years (5), for many decades, Whites have benefited from higher screening rates (6, 7). Several factors have been linked with the dissemination of breast screening practices, including demographic characteristics (8), health coverage (9), risk perception (10), risk factors for breast cancer (8), and media exposure (11). Therefore, it is increasingly important to assess whether risk reduction developments reach patients of different racial/ethnic groups to the same extent and what factors are associated with their knowledge and use. This study attempts to fill this knowledge gap by surveying a sample of women from four ethnic groups (Asian-American, African-American, Latino, and White). Our goals are 3-fold: to measure awareness of risk reduction therapies, discussion of breast cancer risk, and use of therapies; to determine if racial/ethnic differences exist in these areas; and to examine factors associated with recognition of therapies and discussion of risk. | Materials and Methods |
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Women who received mammograms between June 2001 and January 2003 were eligible for participation if they (a) agreed to have breast health information in the registry for research purposes and to be contacted for possible participation in health research studies, (b) had no personal history of breast cancer or a breast abnormality at the time of most recent mammogram, (c) were ages 40 to 70, (d) self-identified as Asian-American, African-American, Latina, or White, and (e) spoke English, Spanish, or Cantonese.
We stratified our sample by race/ethnicity and level of 5-year breast cancer risk (high versus low). Using results from preliminary power calculations, we targeted 580 White women (360 low risk and 220 high risk) and 290 each of African-Americans, Asian-Americans, and Latinas (180 low risk and 110 high risk). A woman was considered high-risk if her 5-year Gail score was 1.67% or higher (13), or if she had at least one first-degree relative with a history of breast cancer, or a personal history of breast biopsy irrespective of overall Gail score. All others were considered low-risk. All high-risk Latina, African-American, and Asian-American women were considered potential participants. A random sample of all participants at low risk and Whites at high risk were selected for participation.
Of the 13,433 eligible participants, 2,800 were sent study letters. Eighty-five of these were deemed ineligible at the time of interview. Of the remaining 2,715 eligible women, 1,711 completed a telephone survey, 398 refused participation, and 606 were unreachable after 4 months of call attempts, yielding a response rate of 63.0%. A detailed discussion of recruitment procedures can be found elsewhere (14). Due to missing information, the number of surveys analyzed was 1,700. The number of African-American and Latino participants at high risk based on actual survey data was lower than expected due to the overall younger age of the sample.
Procedures
Each potential participant was sent study information and a postage-paid return postcard that allowed her to refuse participation. Participants provided verbal informed consent and chose their preferred interview language. Recruitment and telephone interviews were conducted from March 2002 to July 2003. University of California, San Francisco's Committee on Human Research and the participating mammography sites approved all procedures.
Measures
Demographic variables included race/ethnicity, age, relationship status (married or living with a partner versus not), education (grade school, high school or vocational school, college education), median neighborhood household income, country of birth (U.S. or foreign), and language of interview (English, Spanish, or Chinese).
Ten health-related variables were measured. We assessed the specialty of the physician who discussed breast health (obstetrics/gynecology, other), type of health insurance (no insurance, government, private, or group model health plan), Gail score (recalculated using telephone interview information), prior abnormal mammogram, and perceived level of risk (below average, average, or above average). Frequency of worry was assessed using questions based on Lerman's scale (15). Women were asked how often they worried about getting breast cancer and how often during the past month their mood and daily functioning were affected by the fear of getting breast cancer. Responses to items were averaged into a single indicator, with values ranging from 1 to 4 (
0.65). Additionally, we assessed Jewish heritage, reported comorbidity (diabetes, high blood pressure, chronic lung disease, heart disease, osteoporosis, kidney disease, stroke, liver disease, or cancer), body mass index [<25.0 kg/m2 (normal), 25-29.9 kg/m2 (overweight), and
30 kg/m2 (obese)], and exposure to breast health issues via the Internet, television, radio, newspaper, or magazines (any media versus no media).
Main Outcomes
This study examined four risk reduction options: tamoxifen, raloxifene, genetic evaluation, and prophylactic surgery. Participants were given brief definitions of each therapy then asked if they had ever (a) discussed with a doctor, (b) heard of, for those who had not discussed, or (c) used any of these therapies, for those who had ever heard of or discussed. Due to low numbers of affirmative responses in categories (a) and (c), these were combined into a single indicator reflecting the participants' discussion of a therapy with their doctor or use of that therapy.
We defined three global indicators of therapy: recognition of any therapy, discussion of personal risk of breast cancer, and discussion/use of any therapy. Having heard of any one therapy constituted "recognition." Discussion of risk was determined by whether participants had talked to their doctor about their personal risk of breast cancer. And finally, having ever discussed or used any one therapy constituted "discussion/use."
Analysis
Descriptive statistics were used to illustrate the characteristics of the sample and the women in each racial/ethnic group who reported awareness or discussion/use of risk reduction practices using
2. In addition, confidence intervals (CI) were calculated for each of the risk reduction practices and global indicators. Logistic regression models were fit to identify factors associated with two of the global measures: recognition of any therapy and discussion of risk. Variables for multivariate analysis were selected based on significant bivariate associations (P < 0.20) or on findings from the literature.
| Results |
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| Discussion |
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Although overall awareness of therapies was quite high among all participants, discussion and use of any therapy was quite low, even for high-risk participants. Reasons for lack of discussion or use are unclear. Physicians, who traditionally initiate discussion of preventive therapies (16), may have concerns about the potential adverse effects of tamoxifen (17), or are discouraged by the relatively small number of preventable breast cancers, even among tamoxifen-eligible patients (18). Other therapies showing a low rate of use, such as raloxifene, are not yet approved for the prevention of breast cancer and are associated with an increase in thrombotic events, even if the risk for endometrial cancer is not increased (19). Genetic testing, although increasingly available, has limited use and is expensive and is generally not covered by health insurance (20).
A second goal was to examine racial/ethnic differences in breast cancer risk reduction practices and reported risk discussion. Our findings suggest that whereas strong ethnic differences exist in awareness of therapies, these differences are reduced in the overall discussion of risk or eliminated in the discussion/use of individual therapies. Irrespective of risk level, White women were more likely to report recognition of individual therapies than other racial/ethnic groups. Research indicates that African-American women know significantly less about breast cancer and genetic testing than their White counterparts (21).
A third goal was to assess factors associated with recognition of therapies and discussion of risk. Discussion of risk may be associated with issues of language and communication. Multivariate analysis revealed limited discussions among women whose language preference was other than Englisha group likely to have difficulty communicating or understanding complex information such as relative risk or the benefits and side effects of drugs in their non-native language. Low health literacy, which correlates with low socioeconomic status and older age, may play a role in obtaining information about breast cancer risk reduction.
Self-reported media exposure to breast health issues, which we conjectured would prompt participants to get information and discuss therapies with physicians, affected risk discussion, but not recognition of the individual therapies. Given recent media reports about tamoxifen evaluation, highlighting the need for women at high risk to weigh its risks and benefits (11), it is not surprising that this group was more likely to report risk discussion with physicians.
Perceived risk of breast cancer and perceived physical indicators of risk such as prior abnormal mammography were associated with increased discussion. Having an abnormal mammogram, even though not considered an independent risk for breast cancer, increases a woman's anxiety and may promote discussion with her provider (9). Given that perception of risk was associated with other breast cancer-preventive behaviors (10), the results of our study underscore the importance of the subjective aspects of the clinical encounter, and their need to be addressed by physicians in clinical practice.
Older participants were less likely to discuss breast cancer risk irrespective of their objectively higher risk of the disease. This finding makes sense in light of other research on cancer which has found that older adults are less likely to be screened for cancer, and more likely to have advanced cancer at presentation, and to suffer disproportionately high levels of cancer mortality (8). In addition, older age, despite being an objective risk factor, is not usually recognized by women as such; therefore, older women may not initiate discussion of risk with their physicians.
Our study has several limitations. The Gail model may not accurately estimate true risk for an individual woman, particularly among minority or young women (22, 23). Because our sample came from a mammography registry, our findings may not be generalizable to women who have not had a mammogram or who reside in other regions. Women recruited from a registry may be more health conscious and in closer contact with a medical system; therefore, we would expect a higher level of awareness and discussion of breast cancer risk compared with the general population. Also, due to the cross-sectional nature of the data, we were unable to identify causal relationships. Despite these limitations, our data set is large, population-based, and racially/ethnically diverse.
Our study highlights that many women are aware of one or more of the individual preventive breast cancer therapies available to them, although discussion with their clinicians and use of therapies are limited. It is encouraging that therapeutic discussions seem to be determined in part by issues related to the needs and health of patients, as women at high risk report engaging in therapeutic discussions and treatments more frequently than women at low risk. However, the data suggest that interventions to increase discussion of preventive therapies among women at high risk are warranted.
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The costs of publication of this article were defrayed in part by the payment of page charges. This article must therefore be hereby marked advertisement in accordance with 18 U.S.C. Section 1734 solely to indicate this fact.
Received 10/25/04; revised 10/19/05; accepted 11/ 9/05.
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