Socio-Cultural, Behavioral and Psychological Issues: The Human Side
Until breast cancer can be prevented, understanding how best to provide psychological and emotional support will enable breast cancer patients to have the highest quality of life. It may also lengthen their survival time. BCRP research reflects the complexity of the non-medical aspects of breast cancer. Topics include: what aspects and types of support groups work best; the impact of cultural beliefs; how and in what ways the support of significant others is important; and how to help women in the transition back to normal life. All of this research is aimed at lessening the isolation, uncertainty and fear experienced by women who are at high risk, newly diagnosed, or coping with treatment and post-treatment. Although there is more knowledge about how to help these women than there was a decade ago, much remains to be discovered and put into practice. The BCRP continues to encourage and support this research.
Research in Progress
Do Community Cancer Groups Enhance Well-Being? Matthew J. Cordova, Ph.D., at Stanford University, Palo Alto is examining how past traumas and current social support influence how women with breast cancer think and feel about the disease. He is also investigating whether support groups are helpful, and, if so, what aspects are most helpful. At the half-way point in the study, he has found that cancer patients who write about their cancer experience using more cognitive words and fewer emotional words report greater emotional distress. He has also found that patients who have higher confidence in managing their feelings about cancer are more likely to use a fighting spirit to decrease their emotional distress.
Effectiveness of Electronic Support Groups for Breast Cancer. Morton Lieberman, Ph.D., of the University of California, San Francisco is engaged in a pilot study to determine whether support can be provided at a therapeutically effective level over the Internet. If it can, he is also investigating how Internet support differs from traditional face-to-face support. Preliminary findings suggest that on-line groups can, over time, develop in the direction of providing therapeutically effective support. One important factor seems to be the behavior of the on-line group leader. When leaders express inclusiveness and positive emotions, and also limit tentativeness, it leads to a more cohesive group. Members' expression of positive emotions are maximized by leader expression of positive emotions and low rates of anxiety and sadness. Dr. Lieberman will use the results of this pilot study to design a larger and more definitive study.
Alternative Support for Rural and Isolated Women in an HMO. Cheryl Koopman, Ph.D., Stanford University, Palo Alto and Mary Anne Kreshka, M.A., Sierra Nevada Memorial Hospital Cancer Center, Nevada City are investigating a support alternative for women with breast cancer who are psychologically, socially or geographically isolated. The team is adapting a workbook-journal developed in a pilot BCRP study. They have revised the workbook-journal based on three focus group meetings, a literature review, and feedback from the pilot study. The revision added two new sections: “Feeling Alone,” and “Spirituality.” They are ready for the major data collection phase of the study, to determine whether women who receive the workbook-journal will show reduced distress and improved coping, as compared to a control group. The team will also examine characteristics of women who benefit most from the workbook-journal.
Breast Cancer Survivorship: Partner's Role in Recovery. The transition from being a breast cancer patient on active treatment to being a survivor on long-term follow-up can be upsetting and disruptive. This is especially true for women who don't get support from their intimate partners. Beth E. Meyerowitz, Ph.D., of the University of Southern California, Los Angeles is investigating how partners' reactions during this transition relate to patients' quality of life, relationship adjustment, personal growth, and coping. During the project's first year, she developed, designed and printed questionnaires. She has begun recruiting women with breast cancer and their partners. Understanding the role that partners play in patient adjustment will enable medical teams to provide couples with information to enhance quality of life and communication.
Beliefs and Risks of Breast Cancer Among African Immigrants. Cultural beliefs affect women's health care behavior. Understanding cultural beliefs can help shed light on why some groups of women don't get early detection services and tend to consult a doctor when their disease has progressed to later stages. Yewoubdar Beyene, Ph.D., of the University of California, San Francisco is undertaking a qualitative anthropological study. She will identify culturally-specific factors that influence how African immigrant women in California understand breast cancer symptoms and perceive their risks, as well as how these beliefs create barriers to early detection. Initial findings, based on focus group interviews, indicate that immigrant African women do not generally feel comfortable with breast self-examination, because touching the breast is considered sexual. They often associate breast cancer with death. African immigrant women generally have little knowledge about treatments available when a diagnosis is made early. The most common consequence of breast cancer they mention and fear is mastectomy. Many Africans believe in reincarnation and that a person who has body parts removed will return with those body parts missing. As the study continues, it will provide information vital for developing culturally-appropriate education guidelines for early detection of breast cancer in Africa n immigrant communities.
Tamoxifen Prevention: Is it Acceptable to Women at Risk? The chemotherapy drug tamoxifen has been shown to reduce the incidence of breast cancer in women at high risk for the disease who have been enrolled in clinical trials. However, numerous concerns remain about tamoxifen's potential adverse effects and the drug's benefits for high-risk women in the general population. Joy Melnikow, M.D., M.P.H., of the University of California, Davis is developing a deeper understanding of how women at high risk of breast cancer weigh the risks and benefits of tamoxifen. In the first year of a three-year project, she has begun to determine the degree to which breast cancer risk, calculated with a risk-screening tool developed by the National Cancer Institute, is correlated with self-perceived risk of breast cancer. She has also started to develop an educational script, which includes a flip chart and color-coded beads to represent probability of risk, to be used to educate women at high risk for breast cancer about the potential benefits and risks of tamoxifen. In addition, she has started to assess how women's underlying attitudes towards tamoxifen-related outcomes may influence their decisions about taking tamoxifen to reduce their breast cancer risk. Over the next year, she will interview a diverse group of approximately 450 women in English or Spanish.
Research Initiated in 2000
A Patient Decision Support Framework for Breast Cancer. It's difficult for physicians to pinpoint the best treatment for breast cancer today. For example, chemotherapy only benefits approximately 10% of patients, and physicians are searching for ways to identify those women. C. Anthony Hunt, Ph.D., from the University of California, San Francisco is attempting to demonstrate the feasibility of a computerized process to aid physicians and women with breast cancer in making decisions about treatment. The process allows the physician to input personal information about a patient (such as age, ethnic group, family history of breast cancer) and information about her tumor, including the tumor's size, stage, and a large amount of information about the tumor's genes and proteins. The computer process then predicts the possible risks and benefits of various treatments, using available information about outcomes for patients with similar personal and tumor characteristics. The information about possible treatment outcomes is presented in computer graphics that can be understood by both patient and physician. This research is designed to allow physicians in the future to optimize breast tumor treatments for individual patients, reduce errors, and improve outcomes, with considerable cost savings for women affected by breast cancer and society.
Mechanisms of Radiation-Induced Fatigue in Breast Cancer. Breast-conserving surgery followed by radiation is a treatment option selected by more than half of breast cancer patients. One of the most common side effects of radiation therapy is fatigue. Fatigue is not typically debilitating. However, it can interfere with daily activities, and significantly impair quality of life, mood, and social relations. This all comes at a time when women are trying to cope with the demands of diagnosis and treatment. Julienne Bower, Ph.D., at the University of California, Los Angeles will study factors that may contribute to fatigue. She will investigate how psychological and behavioral responses to breast cancer may impact fatigue. She will also consider biological factors, such as radiation-induced changes in the immune system, that may also contribute to fatigue. The goals are to advance understanding of radiation-induced fatigue, and point toward interventions to reduce this symptom. Another goal is to develop ways to identify women at risk for long-term fatigue, who could benefit from intervention at an earlier stage.
Cognitive Changes After Adjuvant Therapy for Breast Cancer. Many breast cancer patients who receive chemotherapy say that they suffer memory and concentration problems, even years after therapy. Some recent publications also suggest that cognitive deficits may occur in women treated with high-dose or standard post-operative chemotherapy. Rebecca Rausch, Ph.D., also at the University of California, Los Angeles will evaluate possible cognitive changes in four groups: 1) breast cancer patients receiving standard-dose adjuvant chemotherapy after surgery; 2) breast cancer patients treated with anti-estrogen (tamoxifen) therapy after surgery; 3) breast cancer patients not treated with chemotherapy or hormonal therapy; and 4) healthy women with no history of cancer. Dr. Rausch will also investigate the relationship of any cognitive impairments to hormone changes induced by therapy, and assess the role of factors such as menstrual history, age, educational level and tumor stage.
Communicating Breast Cancer Risk in Ethnically Diverse Women. Women can now take the chemotherapy drug tamoxifen to reduce their risk of breast cancer. Other preventive medications are likely to become available. Linda Lillington, R.N., D.N.Sc., at Harbor-UCLA Research & Education Institute will investigate how best to communicate complex issues about breast cancer risk reduction. Patients need education to make informed decisions about risk-reduction therapy with their health care providers. Careful consideration must be given to individual risk factors and the potential risks and benefits of prescribed treatments. There are currently no educational materials that health care providers can use to effectively present quantitative information about recent breast cancer prevention results to ethnic minority women. Dr. Lillington will develop, and begin evaluating, educational materials written at a 6th grade level and designed to give English-speaking and Spanish-speaking women at a public hospital a clear understanding of the risks and benefits of taking tamoxifen to reduce their risk of breast cancer.
Breast Cancer Prevention: The Views of Women and Physicians. Celia Kaplan, Ph.D., of the University of California, San Francisco will investigate how doctors advise their patients about breast cancer risk, and the knowledge, attitudes and practices of women and physicians with regard to breast cancer prevention. She will conduct a telephone survey of 1200 women ages 40-75, from four ethnic groups, who have recently had mammograms. Women at high and low risk of breast cancer from each ethnic group will be included in the survey. Dr. Kaplan will also survey 1000 randomly selected Bay Area physicians about their views on obstacles to breast cancer prevention.
