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:
- 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?
To address these issues the CBCRP solicits applications from community academic partnerships as well as individual investigators.
The CBCRP has been supporting Community Research Collaborations (CRC) for over 11 years. These partnerships are based on the established principles of communitybased 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.
The CBCRP offers pre-application teleconferences to provide information on CRC application requirements and tips for successful grant applications. We are encouraged that many CRC grants focus on the underlying disparities of underserved populations through innovative and understudied research areas. We feel that addressing these gaps in our knowledge will lead to promising solutions for underserved communities disproportionately affected by breast cancer.
In addition to the CRC awards, the CBCRP supports the “Community Impact” priority issue with IDEA grants, career development awards, and the Joining Forces Conference Award.
Three 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
Research Conclusions
South Asian Women with Breast Cancer: What
are Their Needs?
Increasing numbers of South Asian women are
diagnosed with breast cancer each year; however,
little is known about their psychosocial
and practical needs. Roshan Bastani, Ph.D., and Beth Glenn, Ph.D., at the University of California,
Los Angeles, and Zul Surani, B.S., at the South
Asian Cancer Foundation, Mission Hills, conducted
a pilot study to assess the needs of South
Asian women with breast cancer and outline the
essential components of an intervention to meet
these needs. Their semi-structured interviews
with 40 South Asian breast cancer survivors and
10 other community members highlighted the
need for intervention programs that use religious
and community networks; promote healthy lifestyles;
address the important role of spirituality
in the breast cancer experience; and tackle the
social stigma that surrounds South Asian breast
cancer survivors. The research team is currently
disseminating its results as well as pursuing
funding to implement the intervention developed
during the pilot project.
Informal and Formal Support and Needs Among
Samoan Survivors
Breast cancer is the leading cause of cancer for
Samoan women, yet there is no information on
the relative importance informal and formal support
play in their long-term survival and quality
of life. Sora Park Tanjasiri, Dr.P.H., M.P.H., at California State University, Fullerton, and Sala
Mataalii, at the Samoan National Nurses Association,
conducted a pilot project that expored
the formal and informal social support needs of
Samoan women diagnosed with breast cancer.
Through interviews with 20 Samoan survivors
and 40 members of their informal support network,
Dr. Tanjasiri and Ms. Mataalii identified
important themes related to women’s social support
needs and experiences. They have shared
these findings with the community and are now
working with community members to refine an
existing community-based social support program
so that it better meets Samoan survivors’ needs.
The researchers intend to publish their findings as
well as present them at professional conferences.
Hormone, Psychologic and Immunologic Factors
& Breast Cancer Survivorship
Researchers have theorized that the timing of
breast cancer surgery may affect a woman’s
risk for recurrence. Hillary Klonoff-Cohen, Ph.D.,
at the University of California, San Diego, and
colleagues are exploring this question in a study
entitled “Looking Forward to LIFE,” which will
investigate the role that hormone levels at the
time of surgery, stress, and the immune system
play on breast cancer survivorship. Earlier this
year, the CBCRP decided to end this project due
to limited progress in recruitment for the study.
The researchers have submitted their proposal to
other funding agencies and hope to have the opportunity
to conduct the fully proposed study.
Latinas and DCIS: Treatment Decisions and Quality
of Life
Widespread mammography screening has resulted
in an increase in the number of women diagnosed
with ductal carcinoma in situ (DCIS), a noninvasive
form of breast cancer. However, little
is known about treatment decision-making and follow-up care among women with DCIS, particularly
Latinas. Celia Kaplan, Dr.P.H., at the University
of California, San Francisco, and colleagues
interviewed English- and Spanish-speaking
Latinas and white women diagnosed with DCIS.
They then developed, tested, and implemented a
telephone survey to assess and compare treatment
selection, decision-making, quality of life,
and the receipt of follow-up care. Dr. Kaplan and
her team found, among other things, that the
vast majority of the respondents (67%) chose
breast-conserving surgery; that English-speaking
Latinas (87%) and Spanish-speaking Latinas
(82%) were more likely to receive radiation than
white women (72%); and that Spanish-speaking
Latinas were less likely to have reconstruction
than the other two groups of women. Dr. Kaplan
intends to use these research findings to develop
culturally sensitive approaches to treatment
decision-making and follow-up care for women
diagnosed with DCIS.
Social Support and Quality of Life in Older Minority
Women with Breast Cancer
Breast cancer care typically fails to acknowledge
the role of cultural diversity in social support.
Such cultural insensitivity may hinder the development
of trusting partnerships between the
patient, family, and providers. This, in turn, may
exacerbate disparities in breast cancer treatment
and survival. Yoshiko Umezawa, M.H.S., at the University of California, Los Angeles, surveyed
99 Latina, 66 African American, and 92 white
women newly diagnosed with breast cancer to
gain insight into the role social and religious support
plays in helping minority women cope with
their diagnosis. Ms. Umezawa found that, overall,
Latinas and African American women were
more likely to rely on social and religious support
than white women. She also found that minority
women, especially Latinas, were more likely than
white women to receive support from children;
that less-acculturated Latinas were more worried
about being a burden on their support network;
and that minority patients received more information
from doctors if their companions asked
questions. These findings could help health care
providers develop more culturally sensitive partnerships
with their patients that can help improve
quality of life after a breast cancer diagnosis.
Fresno Breast Cancer Navigator Pilot Program
A complex health care system awaits women
diagnosed with breast cancer. The many different
types of doctors and multiple types of treatments
that patients must pursue often contribute to disparities
in breast cancer care and survival. Breast
Cancer Navigator programs have been identified
as a practical solution to improving care for
underserved women. However, it is not known
which type of Breast Cancer Navigator program
is best. Mary Wallace at the San Joaquin Valley
Health Consortium, John Zweifler, M.D., at
the University of California, San Francisco, and John Capitman, Ph.D, at California State University,
Fresno Foundation designed, pilot tested,
and evaluated a Breast Cancer Navigator service
designed to help address racial/ethnic and insurance-
related disparities in breast cancer care at
a Fresno safety-net hospital. This work involved
identifying points of service breakdown and determining
if insurance or race were related to service
breakdown, conducting survivor interviews,
determining the best way a Breast Cancer Navigator
program could address the problems they
had identified, hiring and training Breast Cancer
Navigators, and conducting patient exit satisfaction
interviews. The research team has submitted
a grant to conduct a three-year comparative
study of the effectiveness of the Breast Cancer
Navigator Model. This study would examine the
differences in timing and completion of care between
patients that receive care at the Fresno’s
safety-net hospital, and those that receive care
at a private hospital within the same Community
Medical Center system.
Breast Health Literacy and Health Care Decision
Making
Resources that address healthcare services specific
for each Asian sub-population, specifically
the Filipina, Laotian, and Chinese communities,
are scarce. Joel San Juan, M.S., at Operation Samahan
Inc., a primary care health clinic, and Suzanne
Lindsay, Ph.D., M.P.H., at the San Diego
State University Research Foundation, received
a planning grant to strengthen the scientific and
community elements of a research project that
would explore the effect cultural factors have on
the breast health beliefs and behaviors and to
develop an intervention that would addresses the
specific health needs of women in the Chinese, Filipina, and Laotian communities. As part of this
effort, the collaborators conducted four focus
groups in the Chinese, Filipina, and Laotian communities
and held eleven partnership meetings
to discuss the project. The partners are pursuing
additional funding to continue this work.
The Breast Cancer Experience of Slavic Women
The greater Sacramento area is home to the largest
Slavic community in the country (close to
100,000 persons). Little is known about this population’s
understanding of and experiences with
breast cancer. Debora Paterniti, Ph.D., at the University
of California, Davis, and Roman Romaso,
at the Slavic Assistance Center, Sacramento,
conducted six focus groups with first and second
generation Slavic women in Sacramento and Yolo
counties to learn about their breast cancer and
breast health experiences. They also conducted a
focus group with health professionals and leaders
in the Sacramento Slavic community. Dr. Paterniti
and Mr. Romaso found that Slavic immigrant
women in these areas have a need for culturally
appropriate accessible information about breast
health and cancer prevention. Their research
also indicated that it would be important for this
information to come from a trusted source; be
designed to empower women in their interactions
with U.S. physicians; and offer strategies for
maintaining breast health and preventing cancer.
These findings have been presented at national,
state, and local meetings of social scientists and
cancer researchers. Dr. Paterniti and Mr. Romaso
intend to seek additional funding to develop and
test print, radio, and face-to-face educational
intervention programs for Slavic women.
Introducing Acupuncture to Black Survivors for
Wellness
Studies have shown that acupuncture can help
improve wellness in breast cancer survivors by
reducing symptoms and improving quality of life.
African Americans are much less likely than members
of other racial groups to utilize acupuncture
health services. Carolyn Tapp, of the Women of
Color Breast Cancer Survivors Support Project,
and Michael Johnston, Ph.D., at the University
of California, Los Angeles, received a planning
grant to help them strengthen the research design
and methodology of a study that would discover
the reasons why African American breast cancer
survivors are less likely to seek out acupuncture.
As part of that effort, the researchers conducted
interviews with African American breast cancer
survivors and worked together to obtain funding
to continue the work.
Factors Influencing Breast Cancer Screening
Among Older Thai
Asian women have a lower incidence of breast
cancer than white women. Whether this reflects
a lower rate of participation in mammography
screening is not known. Mary Jo Clark, Ph.D., RN,
at the University of San Diego, and Bulaporn Natipagon-
Shah, Ph.D., R.N., at the Thai Health and
Information Service, Los Angeles, conducted focus
groups with Thai women to learn more about
why they have, or have not, gotten a mammogram.
They then used this information to develop
a telephone questionnaire about mammography
screening that was used in interviews conducted
with 360 Thai women aged 40 to 81 living in Los
Angeles, Riverside, Orange, San Bernardino, and
San Diego counties. Drs. Clark and Natipagon-
Shah found that while a majority of the women
(84%) had had a mammogram at some time, almost
half (44%) did not get a mammogram annually,
as is recommended by the American Cancer
Society. They also found that although most of
women were knowledgeable about breast cancer,
they perceived Thai women, particularly young
women, to be at low risk. Major factors impeding
screening included lack of health insurance,
cost of screening, and language difficulties. Other
barriers included lack of time either due to family
or work responsibilities and distance to services.
These findings suggest avenues for intervention
to increase mammography screening in this population
and they are the focus of a follow-up study
the researchers have proposed.
Increasing Mammography Among Latinas with
Disabilities
Both women with disabilities and Latinas are less
likely to obtain mammograms than other women. H. Stephen Kaye, Ph.D., at the University of California,
San Francisco, and Elsa Quezada, at the Central Coast Center for Independent Living, Salinas,
investigated whether a breast cancer peer
education program designed specifically for Latinas
with disabilities could increase mammography
screening. Dr. Kaye and Ms. Quezada hired Latinas from the Central Coast as community health
workers (promotoras) and trained them to provide
breast cancer and mammography peer education
classes. The promotoras provided classes to 350
women. Ninety-five of these women were Latinas
with disabilities who were over 40 and who had
not recently, if ever, had a mammogram. The
participants were tested before and after the peer
education program to assess their knowledge of
mammography. The test results showed that the
peer education program increased the women’s
awareness of breast cancer and mammography
and boosted their confidence in their ability to obtain
a mammogram. In addition, a follow-up questionnaire
found that a majority of the participants
either obtained a mammogram or attempted to do
so during the two months following the class. Dr.
Kaye and Ms. Quezada are currently developing
a more broadly focused promotora health promotion
program for Latinas with disabilities that will
include multiple components, including breast
cancer and mammography.
Assessing Recurrent Genomic Aberrations Linked
to Ethnicity
In the U.S., the incidence of breast cancer in
African Americans is about 20 percent lower than
it is in white women. However, the prognosis
in African Americans with breast cancer is 20
percent poorer. Studies have shown that African
American women tend to have tumors that are
larger and more advanced in stage than white
women. They also tend to have higher lymph
node involvement and more distant metastasis.
The reasons for these differences remain
unclear. Koie Chin, M.D., Ph.D., at the University
of California, San Francisco, and colleagues
compared breast tumor tissue from 122 African
Americans and 106 white women to see if they
could identify genomic variations that could account
for these differences. First, they classified
the tumors into three genomic subtypes; then,
they measured disease-free survival according
to genomic subtype. This analysis showed no
significant differences between African American
and white women’s tumors. A second analysis
of gene expression identified more than 40 genes
that were turned on at a higher level in the African
American women’s tumors than in the white
women’s tumors. To follow up on these findings,
Dr. Chin and his team intend to conduct a
combined analysis of genomic copy number and
gene expression. This work could lead to a better
understanding of why African American women
have a poorer prognosis than white women.
Grants in Progress: 2008 Addressing Cultural & Tribal Issues in Breast
Cancer A Blueprint for Advancing Quality in Breast Cancer Breast Health Behaviors of Immigrant Afghan
Women Breast Cancer Education for Deaf and Hard-of-
Hearing Women Expanding Rural Access: Distance Delivery of
Support Groups Mammography Screening for Latinas with Diabetes Neighborhood Environment and Obesity in Preadolescent
Girls Networking Breast Cancer Navigator Programs in Science Literacy & Breast Cancer Clinical Trials
Education Sister Survivor: African American Breast Cancer
Coalition Social Capital, Social Support and Long-Term
Quality of Life Southeast Asian Breast Health Navigation Telephone-based Decision Support for Rural Patients Underserved Women with Breast Cancer at End
of Life Young Breast Cancer Survivors: Ten Years Later |
Research Initiated in 2008 Adapting a Breast Cancer Education Program for
South Asians APOS 5th Annual Conference Breast Cancer Clinical Trials Education Program Breast Cancer Risk Reduction in American Indian
Women Community Breast Cancer Screening & Prevention
Conferences An Ecological Study of Quality of Life in Low-
Income Women Increasing Mammography Screening in Latinas
with Diabetes Increasing the Voice of African American Women
in Research Latina Breast Cancer Survivors…Our Experience Mindful Movement Program for Breast Cancer
Survivors Nail Salon Workers: Chemical Exposures in the
Workplace Neighborhoods and Obesity in Pre-adolescent
Girls: Part II Provider Communication and Health in Breast
Cancer Survivors Quality of Mammography Facilities Serving Vulnerable
Women Reproductive Concerns and Depression among
Younger Survivors |
