Community Impact of Breast Cancer: The Social Context
Overview: California is comprised of diverse communities differing by multiple characteristics such as ethnicity, culture, language, sexual identity, immigration history, and socioeconomic status. This diversity offers the unique opportunity to investigate disparities and the unequal burden of breast cancer among underserved groups. Critical questions to be addressed include:
- How do poverty, race/ethnicity, and social factors impact incidence and mortality for breast cancer?
- What are the sociocultural, behavioral, and psychological issues faced by women at risk for or diagnosed with breast cancer?
- What services are needed to improve access to care in order to improve quality of life and reduce suffering?
The CBCRP has been supporting Community Research Collaborations (CRC) for 13 years. These partnerships are based on the established principles of community-based participatory research (CBPR), whereby academic and community investigators work together to identify the research question, develop the study design, carry out the research, analyze results, and disseminate information to scientific and lay communities.
In this award cycle, this priority issue will be studied through SRI awards, IDEAs, career development awards, and Joining Forces Conference Awards.
The CBCRP funded ten new projects in 2009 that address our Community Impact priority issue. Three CBCRP research topics are represented in this section:
- Health Policy and Health Services: Better Serving Women’s Needs
- Disparities: Eliminating the Unequal Burden of Breast Cancer
- Sociocultural, Behavioral, and Psychological Issues Relevant to Breast Cancer:The Human Side
Community Impact Portfolio
The health policies established in Sacramento can have a significant effect on the community. Researchers can help by providing the science to guide evidence-based policies. California is in the process of developing a new approach to regulating chemicals, so it is an ideal time to ensure that any new rules protected Californians from chemicals that could cause breast cancer. John Balmes of the University of California, Berkeley is leading a project to show those developing California’s new chemicals policy how to address breast and other hormonal cancers. They will develop an inventory of existing tests for chemicals that affect the biological mechanisms involved in breast cancer and define the tests that still need to be developed. Finally, they will offer recommendations for prioritizing the chemicals to be screened for their potential role in breast cancer.
Given the ethnic and cultural diversity in California, our state is well positioned to research issues related to disparities in health care related to breast cancer. Two studies will help us redefine how researchers will address the topic of disparities. Scarlet Lin Gomez of the Northern California Cancer Center is leading a project to determine how the burden of breast cancer differs between various groups. In collaboration with a panel of experts, she will create and test in multiple languages standard questions for breast cancer research on race, ethnic group, migration history, income and education level, disability, sexual orientation, and gender. This will promote a better understanding of who is affected by breast cancer and allow comparisons between and combinations with data from different studies. Daniel Stram of the University of Southern California will develop innovative statistical techniques to analyze complex genetic data from the ongoing African American Breast Cancer Study; evaluate which methods are most useful, particularly for people of mixed ancestry; and explore susceptibility.
The California Latino population is at increased risk for financial hardships, poor communication with clinicians, job disruptions, body image issues, rejection by partners, fear of recurrence, anxiety, depression, and poor health-related quality of life compared to white women diagnosed with breast cancer. Psychosocial interventions designed specifically for Spanish-speaking Latinas are sorely needed. Anna Nápoles-Springer from the University of California, San Francisco and Carmen Ortiz at Círculo de Vida Cancer Support and Resource Center are funded for a community collaborative project to address the issue of culturally and linguistically appropriate support services for Latinas diagnosed with breast cancer. Dr. Nápoles-Springer and Dr. Ortiz will develop a community-based cognitive behavioral therapy intervention for newly diagnosed, Spanish-speaking Latinas with breast cancer. The 12-week intervention (Nuevo Amanecer—A New Dawn) will be adapted from an evidence-based intervention previously designed for non-Latinas. The program will be delivered by trained peers (Latina breast cancer survivors) in convenient settings, through the Círculo de Vida community organization.
African Americans are diagnosed with more advanced cancer, experience lower survival and greater morbidity and mortality; and African American breast cancer survivors experience lower health perceptions with diminished physical and functional well-being. These negative outcomes indicate that the support needs of these women are extensive. Kimlin Ashing-Giwa and Carolyn Tapp from the City of Hope National Medical Center and the Women of Color Breast Cancer Survivors Support Project received a planning grant to conduct a health-related quality of life study of African American breast cancer survivors to determine the value of peer support groups. The team will compare peer group support vs. hospital/clinic-based support groups vs. non-support group women. During this project they will publish the “Culturally-Informed, Peer-based Breast Cancer Support Group Guidebook” developed from previous CBCRP grant support.
California researchers are uniquely positioned to explore why some groups of women are more likely to die even when diagnosed at the same stage, with the same kind of cancer. Principal investigators from eight ongoing studies are collaborating on a pilot project to combine their data and address new and important questions about this disparity. If they are successful, the CBCRP could fund a study of up to $3.9 million to identify these differences, which could lead to ways to reduce breast cancer deaths or prevent the disease. Anna Wu from the University of Southern California will coordinate the study and also represent the Breast Cancer in Asian American Women Study. The other collaborators are: Leslie Bernstein from the Beckman Research Institute of the City of Hope, representing Women’s CARE Study and In Situ Breast Cancer Study; Katherine Henderson from the Beckman Research Institute of the City of Hope, representing the California Teachers Study; Esther John from the Northern California Cancer Center, representing the SF Bay Area Breast Cancer Study; Marilyn Kwan from the Kaiser Foundation Research Institute, representing the Kaiser Pathways and Life after Cancer Epidemiology (LACE) studies; and Kristine Monroe from the University of Southern California, representing the Multi-Ethnic Cohort. This project is supported in part by a grant from the Avon Foundation for Women.
The Women’s Contraceptive and Reproductive Experiences, Women’s CARE study, is a multi-center, population-based case-control study of 2953 white women and 1622 African American women newly diagnosed with invasive breast cancer. These women have been followed since their breast cancer diagnosis between 1994–1998. Yani Lu from the City of Hope National Medical Center, working with her mentor, Dr. Leslie Bernstein, will investigate a variety of risk factors from the CARE study to see to what extent they explain the racial disparities in breast cancer survival between African American and white women. The specific aims of this project are to determine whether breast cancer survival is affected by a woman’s family history of breast cancer, body size measures, exercise before diagnosis, reproductive factors (age at menarche, parity, age at first full-term pregnancy, time since recent birth, and breastfeeding), and exogenous hormone use.
Prior studies have shown that macrophage infiltration into breast tumors is associated with a poorer prognosis. In preliminary studies, Rita Mukhtar from the University of California, San Francisco has found that 95% of breast cancers from women in West Africa display high macrophage levels compared to only 42% of cases from women seen at UCSF. Furthermore, the levels of macrophages were associated with disease recurrence independently of estrogen receptor status, chemotherapy response, and other clinical features. They also found that patients with breast cancer also have elevated levels of circulating macrophages, suggesting that this may be an important biomarker. In this fellowship project, Dr. Mukhtar will collect breast cancer specimens from African American women, look for pathogenic macrophages and compare blood samples from women in the U.S. and Nigeria in order to identify serum markers that correlate with increased macrophage levels in breast tumors.
The ability of older patients to communicate with healthcare providers in the clinic is a key parameter influencing the success of their treatment. Patients with lower health literacy have trouble understanding and recalling complex medical information, and they are less likely to be active participants in their medical care and participate in decision-making. Arash Naeim at University of California, Los Angeles will utilize a conceptual model to study patient literacy issues among older women with breast cancer. Prior to a physician interaction, patients will complete a questionnaire assessing socioeconomic status, health status, emotional state, and health literacy. After the interaction with the physician in the actual clinical setting, the questionnaires will assess self-efficacy, risk perception, and comprehension of informed consent if clinical trial is participation is offered. Dr. Naeim will also assess the value of a patient companion as a positive factor in the physician interaction.
Two other grants will focus on other behavioral and psychological issues relevant to breast cancer.
Many women diagnosed with breast cancer live as long as cancer-free women of the same age due to advances in early detection and treatment. Thus, quality of life for survivors is becoming increasingly important. One potential complication during the survivorship period is breast cancer-related lymphedema—a chronic condition resulting from lymph node dissection and characterized by irregular swelling of the arm, hand, and/or chest. Thus far, survivors have voiced dissatisfaction regarding their education on lymphedema risk and becoming informed about lymphedema risk reduction strategies from their healthcare providers. Marilyn Kwan from the Kaiser Foundation Research Institute will investigate the knowledge base of clinicians and their patient referral practices on this subject in a large HMO setting (Kaiser Permanente of Northern California). Most related studies have only collected data on the patient perspective for quality of care and have largely ignored the clinician perspective. Dr. Kwan’s information will be gathered from both viewpoints to fully evaluate the clinical management of BCRL. In the Kaiser population of 3.2 million members, there are about 2,100 women diagnosed each year with breast cancer with about 18% of patients subsequently experiencing lymphedema.
Finally, breast cancer patients often suffer from sleep disturbance and daytime sleepiness before, during, and after chemotherapy, and they often have a high incidence of anxiety and depression that increases with age. Insomnia has a host of debilitating consequences that include tiredness, negative mood, inability to enjoy family and social relationships, increased severity of pain, and poor overall health. Michelle Rissling at the University of California, San Diego is funded for her dissertation research to elucidate the risk factors for insomnia in breast cancer patients. With her mentor, Dr. Sonia Ancoli-Israel, the 40 participants in this study will complete questionnaires on sleep, health anxiety, cognitive arousal, compensatory sleep effort, depression, anxiety, and menopausal symptoms. Participants will wear an actigraph activity recorder for three days. The goal is to identify potential targets for intervention during the early course of breast cancer therapy and provide methods for identifying breast patients at risk for insomnia.
Community Impact Grants Listing
Sister Survivor: Evaluating Best Practices in Social Support
Ashing-Giwa, Kimlin, Ph.D. (co-PI)
City of Hope National Medical Center
Tapp, Carolyn (co-PI)
Women of Color Breast Cancer Survivors Support Project
Award Type: CRC-Pilot planning grant
$5,000 (COH) & $5,000 (WOC)
CA Chemicals Policy & Breast Cancer
Balmes, John, M.D.
University of California, Berkeley
Award Type: Request for Qualifications
$159,334
Demographic Questions for California BC Research
Gomez, Scarlet Lin, Ph.D.
Northern California Cancer Center
Award Type: Request for Qualifications
$430,988
Patient and Clinician Knowledge of Breast Cancer Lymphedema
Kwan, Marilyn Ph.D.
Kaiser Foundation Research Institute
Award Type: IDEA
$227,784
Risk factors and breast cancer survival in black/white women
Lu, Yani, M.D.
Beckman Research Institute of the City of Hope
Award Type: Postdoctoral fellowship
$89,996
Macrophages in Breast Cancer Patients of African Descent
Mukhtar, Rita, M.D.
University of California, San Francisco
Award Type: Postdoctoral fellowship
$90,000
Health Literacy in Older Patient's Breast Cancer Treatment
Naeim, Arash, M.D., Ph.D.
University of California, Los Angeles
Award Type: IDEA
$180,890
Nuevo Amanecer: Promoting the Psychosocial Health of Latinas
Napoles-Springer, Anna, Ph.D., MPH (co-PI)
University of California, San Francisco
Ortiz, Carmen, Ph.D. (co-PI)
Circulo de Vida Cancer Support and Resource Center
Award Type: CRC-Full
$349,547 (UCSF) & $313,067 (Circulo de Vida)
Health Anxiety as a Risk for Insomnia in Breast Cancer
Rissling, Michelle
University of California, San Diego
Award Type: Dissertation
$73,855
New Methods for Genomic Studies in African American Women
Stram, Daniel, Ph.D.
University of Southern California
Award Type: Request for Proposals
$442,631
Race & Ethnicity in Stage-specific Breast Cancer Survival
Bernstein, Leslie, Ph.D.
Beckman Research Institute of the City of Hope
Award Type: Request for Qualifications
$33,062
Henderson, Katherine, Ph.D.
Beckman Research Institute of the City of Hope
Award Type: Request for Qualifications
$32,956
John, Esther, Ph.D.
Northern California Cancer Center
Award Type: Request for Qualifications
$29,000
Kwan, Marilyn, Ph.D.
Kaiser Foundation Research Institute
Award Type: Request for Qualifications
$30,480
Monroe, Kristine, Ph.D.
University of Southern California
Award Type: Request for Qualifications
$31,043
Wu, Anna, Ph.D.
University of Southern California
Award Type: Request for Qualifications
$163,000
