The Community Impact of Breast Cancer

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:

The CBCRP addresses these issues through program initiated research in addition to the research conducted by community academic partnerships and individual investigators.
Three research topics are represented in this section:

Research Completed in 2009

Increasing Mammography Screening in Latinas with Diabetes
Research shows that Latinas are less likely to get mammography screening than other women. It is even less likely for Latinas with diabetes to get a mammogram, despite more visits to their healthcare provider. Christine Noguera, M.S., of the Golden Valley Health Centers, in Merced, and Stergios Roussos, Ph.D., M.P.H, at the San Diego State University Research Foundation, conducted a pilot study of a systems-level intervention they developed to improve mammography screening for diabetic Latina patients in a primarily farm-working Mexican community. After six months, referrals for mammography screening had increased 41 percent in the study group, compared with 30 percent in the control group. The investigators also conducted a telephone survey that identified a number of barriers to mammography screening in these women. The researchers received another CBCRP grant that will allow them to conduct a more rigorous experimental study of the intervention they developed. This study could lead to the development of a program to increase screening in Latinas that could be duplicated in community settings throughout the state.

Southeast Asian Breast Health Navigation
Southeast Asian women have the lowest rates of breast cancer screening among Asian and Pacific Islander women. Recently, community health outreach workers or “navigators” have shown success in guiding women through the health care system to access needed health care services such as breast health exams and follow-up care. Marjorie Kagawa-Singer, Ph.D., of the University of California, Los Angeles and Mary Anne Foo, M.P.H., of the Orange County Asian and Pacific Islander Community Alliance, Inc., conducted the first-ever study to look at patient navigation in Southeast Asian communities. Their focus groups with 110 Southeast Asian women, 15 providers, and 10 community health navigators allowed them to identify the essential elements of a community-based patient navigation programs that would meet this community’s needs. Their next goal is to develop a formal curriculum to better train patient navigators who are helping underserved, low-income, and limited-English speaking women access quality breast health services.

Addressing Cultural & Tribal Issues in Breast Cancer
American Indian women have the poorest cancer screening rates of any ethnic group. It is estimated that breast cancer deaths could be reduced by more than 30 percent in these women if current recommendations for screening were followed. Linda Navarro at the Turtle Health Foundation, in Sacramento, and Marlene von Friederichs-Fitzwater, Ph.D., of the University of California, Davis, conducted a pilot study that tested an informational/educational DVD called “Mother’s Wisdom Breast Health Program” with 161 American Indian women across tribes in California. They also identified more than 175 tribes, tribal organizations, and individual women who are interested in being part of a future longitudinal study on behavior change. The researchers are continuing to investigate whether increasing awareness and knowledge of breast health and breast cancer risk reduction results in changes in lifestyle and screening behaviors in American Indian women.

Sister Survivor: African American Breast Cancer Coalition
Support groups have been shown to improve breast cancer and quality of life outcomes. However, there is limited research on the role of support groups among African American breast cancer survivors. Kimlin Ashing-Giwa, Ph.D., at the Beckman Research Institute of the City of Hope, in Duarte, and Gloria Harmon, B.A., of Women of Essence, in Los Angeles, conducted focus groups with 93 African American breast cancer survivors in the Inland Empire to identify their unmet needs. They then used that information to develop a guidebook for organizing and implementing peer-based support groups specifically tailored to the needs of African American breast cancer survivors. The investigators intend to continue to refine the guidebook and to prospectively assess the efficacy of the peer support groups in improving survivorship outcomes.

Scientific Literacy & Breast Cancer Clinical Trials Education Program
The Scientific Literacy & Breast Cancer Clinical Trials Education Program (BCCT) is designed to increase scientific literacy, clinical trials participation, and advocacy among African American and Hispanic-American women. Natasha Riley, M.A., at the Vista Community Clinic, and Georgia Robins Sadler, Ph.D., M.B.A, at the University of California, San Diego, developed and tested psychosocial surveys and a culturally appropriate BCCT education program in preparation for piloting a randomized controlled trial of the educational program with 60 African American and Hispanic-American women. The investigators received additional CBCRP funding so that they could begin testing the effectiveness of the BCCT program.

Increasing the Voice of African Americans in Research
The CBCRP developed the Joining Forces Conferences Awards to allow individuals to host meetings that bring together breast cancer stakeholders who wouldn’t normally cross paths. Kimlin Ashing-Giwa, Ph.D., at the Beckman Research Institute of the City of Hope, in Duarte, used this award to sponsor the conference “Increasing the Voice of African Americans in Research: A Dialogue between Advocates and Researchers.” The conference was held on Oct. 4, 2008, and brought together the African American advocacy community and scientists interested in addressing the breast cancer needs of African Americans in Los Angeles, Riverside, and San Bernardino Counties. The conference included talks from researchers and health care providers about breast cancer in the African American community and presentations from community advocates about how their groups are providing support for African American women’s health. The conference included an intensive networking exercise in which researchers rotated through tables of community advocates to brainstorm about research ideas that would be critical and interesting to both partners. Ideas ranged from new approaches to providing health care to new theories for the causes of breast cancer in African American women.

Community Breast Cancer Screening & Prevention Conferences
Genetic cancer risk assessment counseling and testing is the standard of care for helping individuals identify and manage hereditary cancer risks. Jeffrey Weitzel, M.D., at the Beckman Research Institute of the City of Hope, in Duarte, and colleagues developed and presented two conferences on breast cancer risk assessment. One of the conferences was conducted in English, and was designed for patients that had health insurance. The other was conducted in Spanish, and was designed for an underserved high-risk population. Patients and families who had received genetic cancer risk assessment at the City of Hope or a collaborating community-based health facility were invited to the conferences and 150 individuals attended. All of the participants completed surveys about, and attended breakout sessions that discussed, genetic counseling and testing. Findings from these surveys will be used to increase the quality of the programs available for individuals who are at higher risk of developing breast cancer.

Nail Salon Workers: Chemical Exposures in the Workplace
The CBCRP developed the Joining Forces Conferences Awards to allow individuals to host meetings that bring together breast cancer stakeholders that wouldn’t normally cross paths. Linda Okahara, at Asian Health Services, in Oakland, in conjunction with the California Healthy Nail Salon Collaborative, organized a two-day conference “Framing a Research Agenda to Advance Worker Health and Safety in the Nail Salon and Cosmetology Communities” in April 2009 in Oakland. More than 120 people attended the conference, 25 percent of who were nail and hair salon workers. Attendees also included community advocates, health researchers, environmental health scientists, and governmental representatives. To meet the needs of all of the attendees, the conference provided simultaneous interpretation in Vietnamese. Conference participants identified the need for more accurate exposure assessments that can account for multiple chemical exposures, greater understanding of potential linkages between nail product chemical exposure and adverse reproductive outcomes, and better surveillance programs for tracking health impacts in the workforce. The Collaborative intends to convene a scientific advisory committee to address these gaps and to develop and advance a research agenda.

Neighborhood Environment and Obesity in Pre-adolescent Girls
Women who are obese are at higher risk for developing breast cancer. Girls who are overweight or obese are more likely to become overweight or obese women. In addition, childhood obesity may lead to early pubertal development and menarche, which is also a risk factor for adult breast cancer. Obesity is generally understood to be the result of eating poorly and not exercising. However, girls’ eating and exercise habits are very much influenced by their home and school environments. Irene Yen, Ph.D., at the University of California, San Francisco, studied the neighborhoods of 215 girls who were recruited into an ongoing study called the Community Study of Young Girls’ Nutrition, Environment, and Transitions to investigate the association between city planning policies, neighborhood environment (food stores, fast food chains, parks, traffic conditions) and girls’ diet, physical activity, and growth patterns. Findings from this research could identify the types of city planning policies and neighborhood services and conditions that can improve girls’ diet and physical activity, influence their growth patterns and pubertal changes, and, potentially, decrease their breast cancer risk as adults. The researchers were awarded a competitive renewal IDEA award in 2009 to continue pursuing these questions.

Breast Health Behaviors of Immigrant Afghan Women
Muslim immigrant women are less likely to use breast care health services and are more likely to die from breast cancer than other women. The Bay Area is home to the largest Afghan community in the U.S. with an estimate of more than 30,000 individuals. Research conducted outside of U.S. indicates that Afghan immigrant women are more likely to be diagnosed with breast cancer at a young age and at a more advanced stage. Joan Bloom, Ph.D., at the University of California, Berkeley, and Aida Shirazi of the Afghan Coalition, in Fremont, conducted interviews with 53 first-generation immigrant Afghan women with limited English proficiency to learn more about their knowledge of breast cancer, attitudes toward screening, and religious, cultural, and economic barriers to receiving breast health services. Their findings will be used to develop and test a breast health education program for Afghan women.

Networking Breast Cancer Navigator Programs in Northern California
Assisting women with breast cancer through the myriad systems involved in obtaining medical care has become known as "navigation.” Various individuals and agencies in Northern California provide different types of navigation services. Lisa Bailey, M.D., at the Alta Bates Summit Medical Foundation, in Berkeley, and colleagues held a full-day Breast Cancer Navigation Conference that provided an opportunity for physicians, breast cancer advocates and representatives of community hospitals and public health departments in Northern California to learn about the program models currently being utilized, create a network for geographical resource sharing, and discuss the current issues facing breast cancer navigation programs. Conference participants reported that the meeting expanded their informational and support networks and helped them to identify areas for program collaboration.

APOS 5th Annual Conference
The American Psychosocial Oncology Society (APOS) 5th Annual Conference was held in Irvine from February 28 to March 2, 2008. The main focus of this conference was the dissemination of the Institute of Medicine report “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs,” which mandates changes in the delivery of quality cancer care to include psychosocial services. Much of the evidence cited in the report was based on studies in women with breast cancer. Patricia Ganz, M.D., at the University of California, Los Angeles, used this CBCRP grant to provide 14 conference scholarships to psychosocial oncologists throughout California. The scholarship recipients were able to attended the entire conference as well as take part in pre- and post-conference workshops on topics such as “Cancer Navigator: How to Build a Successful Program” and “Complex Communication Challenges in Oncology.” Each participant also received copies of the two comprehensive handbooks the APOS has published on psychosocial oncology.

Young Breast Cancer Survivors: Ten Years Later
About 23 percent of women diagnosed with breast cancer in the U.S. are age 50 or under.Joan Bloom, Ph.D., at the University of California, Berkeley, and colleagues interviewed a population-based sample of 448 women age 50 or under who were cancer-free 10 years after a breast cancer diagnosis and 395 of their friends who had never had breast cancer about their quality of life. Building on a previous award that interviewed young, 5-year breast cancer survivors, the team also asked the survivors to rate their quality of life at 10 years compared to 5 years, to determine how long problems persist. They found that young breast cancer survivors are aging prematurely with respect to certain treatment related problems. However, in general, at 10 years of survival, their quality of life was comparable to that of women without cancer. The researchers intend to follow these women and interview them again when they have been cancer-free 15 years so that they can continue to evaluate long-term effects of cancer treatment on quality of life. Findings from this research were published in Psycho-oncology 16(2007)691.

Social Capital, Social Support and Long-term Quality of Life
Why do some long-term breast cancer survivors experience high levels of quality of life while others report physical and mental concerns long after treatment? Dana Petersen, M.A., M.P.H., at the University of California, Berkeley, explored this question by looking at whether neighborhood factors (i.e., social capital) helped explain some of these differences. Her findings suggested that the social environment of long-term breast cancer survivors is associated with some aspects of quality of life. Findings from this study were published in Psycho-oncology 16(2007)691.

Research Initiated in 2009

CA Chemicals Policy & Breast Cancer
John Balmes
University of California, Berkeley

Demographic Questions for California BC Research
Scarlet Lin Gomez
Northern California Cancer Center

Health Anxiety as a Risk for Insomnia in Breast Cancer
Michelle Rissling
University of California, San Diego

Health Literacy in Older Patient's Breast Cancer Treatment
Arash Naeim
University of California, Los Angeles

Macrophages in Breast Cancer Patients of African Descent
Rita Mukhtar
University of California, San Francisco

New Methods for Genomic Studies in African American Women
Daniel Stram
University of Southern California

Nuevo Amanecer: Promoting the Psychosocial Health of Latinas
Carmen Ortiz and Anna Napoles-Springer
Circulo de Vida Cancer Support and Resource Center and University of California, San Francisco

Patient and Clinician Knowledge of Breast Cancer Lymphedema
Marilyn Kwan
Kaiser Foundation Research Institute

Race & Ethnicity in Stage-specific Breast Cancer Survival
Leslie Bernstein, Katherine Henderson, Esther John, Marilyn Kwan, Kristine Monroe and Anna Wu
Beckman Research Institute of the City of Hope, Northern California Cancer Center, Kaiser Foundation Research Institute and University of Southern California

Risk Factors and Breast Cancer Survival in Black/White Women
Yani Lu
Beckman Research Institute of the City of Hope

Sister Survivor: Evaluating Best Practices in Social Support
Carolyn Tapp and Kimlin Ashing-Giwa
Women of Color Breast Cancer Survivors Support Project and City of Hope National Medical Center

Research in Progress

Adapting a Breast Cancer Education Program for South Asians
Zul Surani, Roshan Bastani, and Beth Glenn
South Asian Cancer Foundation and University of California, Los Angeles

A Blueprint for Advancing Quality in Breast Cancer
Laura Esserman
University of California, San Francisco

Breast Health Behaviors of Immigrant Afghan Women
Aida Shirazi and Joan Bloom
Afghan Coalition and University of California, Berkeley

Breast Cancer Clinical Trials Education Program
Natasha Riley, Vanessa Malcarne, and Georgia Sadler
Vista Community Clinic, San Diego State University Research Foundation, and University of California, San Diego

Breast Cancer Education for Deaf and Hard-of-Hearing Women
Heidi Kleiger and Barbara Berman
Greater Los Angeles Council on Deafness, Inc. and University of California, Los Angeles

Breast Cancer Risk Reduction in American Indian Women
Linda Navarro and Marlene von Friederichs-Fitzwater
Turtle Health Foundation and University of California, Davis

An Ecological Study of Quality of Life in Low-income Women
Yoshiko Umezawa
University of California, Los Angeles

Expanding Rural Access: Distance Delivery of Support Groups
Jim Perkins, Mary Anne Kreshka, and Cheryl Koopman
Northern Sierra Rural Health Network and Stanford University

Increasing Mammography Screening in Latinas with Diabetes
Christine Noguera and Steve Roussos
Golden Valley Health Centers and San Diego State Research Foundation

Latina Breast Cancer Survivors…Our Experience
Brian Montaño and Diana Tisnado
Partnered for Progress and University of California, Los Angeles

Mindful Movement Program for Breast Cancer Survivors
Holly Kiger and Rebecca Crane-Okada
WISE and Healthy Aging and Beckman Research Institute of the City of Hope

Neighborhoods and Obesity in Pre-Adolescent Girls: Part II
Irene Yen
University of California, San Francisco

Provider Communication and Health in Breast Cancer Survivors
Sara Fernandes-Taylor
University of California, Berkeley

Quality of Mammography Facilities Serving Vulnerable Women
Lauren Goldman
University of California, San Francisco

Reproductive Concerns and Depression among Younger Survivors
Jessica Gorman
University of California, San Diego

Telephone-based Decision Support for Rural Patients
Sara O’Donnell and Jeff Belkora
Mendocino Cancer Resource Center and University of California, San Francisco

Underserved Women with Breast Cancer at End of Life
Beverly Burns and Shelley Adler
Charlotte Maxwell Complementary Clinic and University of California, San Francisco