The Community Impact of Breast Cancer:
The Social Context

If research findings are going to lead to action and change, then gathering information that will be important for policy makers at the national, state, and local level is vital. Research in this area is aimed at developing strategies to serve women more effectively by investigating the organizational and sociopolitical context of breast cancer prevention, detection, and treatment.

The CBCRP funds research aimed at making the health care system more responsive to the needs of women with breast cancer and better at preventing the disease. We’re looking for ways to reduce waste and increase access to breast cancer care. We also encourage research on actions that will reduce inequalities in access to prevention and treatment among California’s geographically and ethnically diverse population.

Research in Progress

A number of ongoing CBCRP grants in the topic of Health Policy and Health Services reported substantial progress in 2003. We can improve our understanding of how to help breast cancer patients have the best possible physical and emotional outcomes by focusing on the patient herself and on the medical care system that plays such a central role in her prognosis and eventual heath outcome. The following four studies look at the medical care system. The last study in this section looks at place of residence as a surrogate marker for community-level factors that affect access to care (e.g., transportation, distance to medical facilities, socioeconomic status).

Return to Work After Breast Cancer Surgery.
Diane R. Estrin, of the Women’s Cancer Resource Center, a Berkeley community organization, and Rani B. Eversley, Ph.D., of the University of California, San Francisco, are looking at what helps—and hinders—women returning to work after breast cancer surgery. So far, they have found that women who had chemotherapy or who had symptoms of depression took longer to return to work. Latina women, low-income women, and women with children at home all returned to work more quickly. Low-income and Latina women may have less access to sick leave and disability pay; returning to work more quickly may put them at risk for complications such as arm swelling and fatigue. Latina women, low-income women, and women who had chemotherapy or a mastectomy reported more depression, pain, swelling, and fatigue after surgery. Women who exercised or who used acupuncture, acupressure, or herbal medicine experienced less pain.

The Impact of Structure on Quality of Breast Cancer Care.
Katherine Kahn, Ph.D., at the University of California, Los Angeles, is investigating how the financial and organizational arrangements for breast cancer care—in medical offices, medical groups, and health insurance plans— enhance or diminish quality of care. The research team has developed methods for comparing organizational and financial arrangements between health care providers and is applying those methods to compare breast cancer health care providers in the Los Angeles area.

African American Women and Breast Cancer: What Works?
African American women are less likely than white women to be diagnosed with breast cancer, but those who have the disease are more likely to die from it. Lack of access to care is one factor, but not the whole story. Carol Somkin, Ph.D., at the Kaiser Foundation Research Institute, Oakland, and Priscilla Banks, M.S., at the African American Advisory Committee on Cancer, Hayward, are investigating what aspects of health care settings and interactions with health care providers promote or inhibit culturallysensitive care for low-income African American women who do not have health insurance.

Determinants of Receiving Breast Cancer Treatment in the Underserved. Rose Maly, Ph.D., of the University of California, Los Angeles, is surveying 230 low-income breast cancer patients and their health care providers and analyzing their medical records. The goal is to identify factors in the patients’ lives (for example, lack of transportation) or in the health care system (for example, problems with doctor-patient interactions) that could be changed to reduce the suffering and death in this vulnerable population. The research team has created and tested questionnaires in English and Spanish for patients. They have also finalized a questionnaire for health care providers, and are now enrolling women to interview. The team hopes to use the results to directly improve breast cancer care for low-income, uninsured women. Results from this study have been published in Cancer 97(6) 2003:1517-27.

Does a Peer Navigator Improve Quality of Life at Diagnosis?
Women with breast cancer say they need counseling most when they are newly diagnosed, but many don’t seek formal counseling services because they feel overwhelmed, are unfamiliar with available resources, or are concerned about stigma in seeking counseling. David Spiegel, M.D., of Stanford University, is collaborating with Caroline Bliss-Isberg, Ph.D., of the Santa Cruz community organization WomenCARE, to evaluate the effectiveness of pairing women who have just learned they have breast cancer (sojourners) with trained volunteer breast cancer survivors (peer navigators). Each pair makes at least one contact a week for three months. The relationships can be renewed by mutual agreement every three months. In a preliminary study previously funded by the CBCRP, the research team found that women matched with a navigator maintain their quality of life and actually improve in some areas, but the more successful navigators showed some trauma and depression symptoms. This study is a three-year expansion of the previous research. So far, the research team has trained 20 new navigators and enrolled 51 women with breast cancer. The team is working toward recruiting women from a greater variety of ethnic groups than were enrolled in the preliminary study. A well-designed peer counseling program could cut the human and economic costs of breast cancer in California by giving newlydiagnosed women access to helpful resources and strategies for making medical decisions.

Geographic Variation in Breast Cancer Stage at Diagnosis.
Women whose breast cancer is diagnosed before it has spread to surrounding tissue or to distant sites in the body have a better chance of surviving. Among California counties, the percentage of breast cancer patients who are diagnosed at this early stage ranges from 40 percent to 71 percent. Pamela Davidson, Ph.D., at the University of California, Los Angeles, is investigating how community-level factors, such as the health care delivery system, influence the stage at which a woman’s breast cancer is diagnosed. The team is currently analyzing data from the California Cancer Registry, other databases that track cancer cases, the federal census, and sources of information on the health care system. One goal of this research is data-driven recommendations for community-level interventions to raise the percentage of women whose breast cancer is diagnosed at an early stage.

Research Initiated in 2003

The Cost of Breast Cancer in California.
Wendy Max, Ph.D., at the University of California, San Francisco, will make the first detailed estimate in 17 years of the cost of breast cancer in California, including dollars spent on health care, lost productivity of women living with breast cancer and dying prematurely from the disease, and the lifetime cost of breast cancer for older women on Medicare.