Communicating Breast Cancer Risk in Ethnically Diverse Women

Institution: LA Biomedical Research Institute at Harbor-UCLA Medical Center
Investigator(s): Linda Lillington, R.N., M.N., DNSc. -
Award Cycle: 2000 (Cycle VI) Grant #: 6JB-0024 Award: $244,199
Award Type: IDEAS II
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

Initial Award Abstract (2000)
In the recently completed Breast Cancer Prevention Trial, tamoxifen has been reported to decrease the risk for developing breast cancer by 49%. Decisions about risk reduction must involve patients and health care providers in an informed-decision making process with careful consideration of individual risk factors and the potential risks and benefits of prescribed treatments. As a necessary first step in translating the recent breast cancer prevention results to clinical practice involving ethnic minority women, educational interventions which can effectively present quantitative information need to be developed. The purpose of the current proposal will be to develop and begin evaluation of a risk communication educational tool designed to facilitate accurate risk comprehension and subsequent transfer of the landmark tamoxifen breast cancer prevention results into a primary care setting of a public hospital based population of both English and Spanish speaking women.

A qualitative and quantitative approach will be used to inform the development of the format and language of the risk communication tool. All materials will be developed in English and Spanish using recognized techniques involving focus groups (2 African American, 2 Caucasian, 2 Hispanic English speaking, 2 Hispanic Spanish speaking, N=60-70), forward and backward translation, pre-testing (N=40, ten women from each ethnic/language preference group) to determine clarity, meaningfulness, and level of understanding, and test-retest reliability of the outcome measures. A pilot study involving a pre-test, post-test design will begin evaluation of the culturally sensitive risk communication tool on accuracy of risk perception compared to objective risk and accuracy of the perceived magnitude of breast cancer compared to other competing health risks, i.e., heart disease. Breast cancer risk will be determined using the Gail model and heart disease risk will be determined using criteria from the Framingham Study. Women will complete a pre-test questionnaire to identify demographic characteristics, individual risk factors for breast cancer and heart disease, perceived risk of breast cancer and heart disease, level of understanding of numeracy, and level of acculturation (Hispanic women only). To assess heart disease risk, women will have blood pressure, ECG and a fasting lipid determined. One to two weeks later they will return for a visit to receive results of their risk assessment using the newly developed risk communication educational tool and will complete a post-test questionnaire assessing perceived risk and level of numeracy. The impact of the risk communication tool on improvement of risk comprehension will be determined form pre-test to post-test.

Results from the successful completion of this project will support and inform the design of a full-scale randomized definitive trial of the effectiveness of the risk communication tool in public hospital and clinic settings.

Final Report (2003)
In the landmark Breast Cancer Prevention Trial, tamoxifen was shown to decrease breast cancer risk by 49%. Decisions about breast cancer risk reduction must involve patients and health care providers in an informed-decision making process with careful consideration of the risks and benefits. Reports in the literature indicate that breast cancer risk is often inaccurately perceived. Little is known about barriers to risk comprehension, optimal methods for communicating complex risk statistics or preferences for learning about individual risk.

The purpose of this study was to develop simple but individually tailored breast cancer risk communication materials to help ethnically diverse women receiving care in a public hospital setting better understand their personal risk for developing breast cancer as an important first step in making informed decisions about what they could do to lower breast cancer risk. The project involved three phases: 1) focus groups with providers to develop an interview question guide; 2) individual interviews with patients and providers to discuss issues in breast cancer risk communication; and 3) focus groups with patients to review and evaluate newly developed breast cancer risk communication materials and administration of a newly developed risk perception questionnaire to determine face validity and reliability.

All phases of the research have been completed. Initially, focus groups involving health care providers (OB/GYN Physicians, Women's Health Nurse Practitioners, registered nurses and assistant staff of a Breast Clinic) were conducted. In addition, individual interviews involving ethnically diverse (African American, Hispanic, Caucasian) women and Health Care Providers representing various specialties (Oncology, Women's Health, Family Medicine, General Internal Medicine, Mammography, Breast Surgery) were conducted in English or Spanish. Data were analyzed using content analytic techniques involving 797 single spaced pages of text for the patient interviews and 306 pages of single spaced text for the provider interviews. Educational materials (brochure and slide packet) were developed based on findings from the interviews. The newly developed materials were evaluated via focus groups involving 8 women (English and Spanish speaking) and a judge panel of 4 expert physicians and nurses who provide care to ethnically diverse women in a public hospital setting (content validity index = .911). Materials in English and Spanish were reviewed by 50 ethnically diverse women in various outpatient clinics in a public hospital. A total of 35 women completed the questionnaire on two occasions about 2-3 weeks apart to determine internal consistency (alpha = .708 on the test and .651 on the retest) and test-retest reliability (r = .629).

Participant's comments about the materials were very positive with women: The degree to which these newly developed materials can impact understanding of breast cancer risk and breast health behavior is beyond the scope of this project. These materials can be tested in future research to determine the impact of individualized breast cancer risk communication on women’s health behaviors in an ethnically diverse public hospital setting.