The Community Impact of Breast Cancer: The Social Context
Overview: California is a unique blend of diverse communities, and our state offers tremendous opportunities to uncover the basis for disparities and the unequal burden of breast cancer. What is the influence of poverty, race/ethnicity, and social factors on breast cancer? What are the sociocultural, behavioral, and psychological issues of those affected by breast cancer and what services are needed to reduce suffering? We encourage health policy, health services, and sociocultural, behavioral, and psychological research that address the needs of California’s diverse communities.
A major focus of the CBCRP is to foster collaborative interactions between traditional researchers having the skills in grant preparation and research capacity with community groups having more direct experience with the human issues of breast cancer. The NIH in a recent program announcement (PAR-05-026) has listed many of the advantages for supporting community-based participatory research as follows, “…involving community and academic partners as research collaborators may improve the quality and impact of research by:
• More effectively focusing the research questions on health issues of greatest relevance to the communities at highest risk;
• Enhancing recruitment and retention efforts by increasing community buy-in and trust;
• Enhancing the reliability and validity of measurement instruments (particularly survey) through in-depth and honest feedback during pre-testing;
• Improving data collection through increased response rates and decreased social desirability response patterns;
• Increasing relevance of intervention approaches and thus likelihood for success;
• Targeting interventions to the identified needs of community members;
• Developing intervention strategies that incorporate community norms and values into scientifically valid approaches;
• Increasing accurate and culturally sensitive interpretation of findings;
• Facilitating more effective dissemination of research findings to impact public health and policy;
• Increasing the potential for translation of evidence-based research into sustainable community change that can be disseminated more broadly.”
The CBCRP has been supporting community-based collaborations for nine
years, and we offer workshops and technical assistance to facilitate
new partnerships
and successful grant applications. We are encouraged that many CRC grants
focus on underserved and under-represented populations and disparities
that underlie unequal access to care and less favorable outcomes in breast
cancer treatment. We feel that an “evidence-based” community
project has the greatest potential for a successful intervention.
In addition to the CRC awards, the CBCRP supports the community impact
priority issue with innovative IDEA grants and career development awards.
Three of the CBCRP’s 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
Funding Data: |
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Proportion of Total |
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Community Impact grants awarded in 2005: |
12 |
23% |
|
Funded amount: |
$1,178,444 |
15% |
Community Impact Portfolio Summary:
In 2005 the CBCRP funded seven Community Research Collaboration (CRC) pilot awards. These support community-based participatory research that requires equal partnership between scientists and community members. These projects are intended to allow the gathering of pilot data and to prepare the research team to launch a three-year full research project. Six of these new CRC awards address racial/ethnic minority populations, and another addresses economically disadvantaged women.
Shelley Adler, Ph.D., from the University of California, San Francisco, and Beverly Burns, M.S., L.Ac, at the Charlotte Maxwell Complementary Clinic will examine the beliefs, values, concerns, expectations, and goals about end-of-life from the viewpoints of underserved women with breast cancer, their physicians, complementary and alternative medicine practitioners, and informal caregivers. A January 1998 Institute of Medicine report highlighted the fact that there is room for a great deal of improvement in end-of-life care.
Anna Napoles-Springer, Ph.D., M.P.H., at the University of California, San Francisco, and Carmen Ortiz, Ph.D., of Circulo de Vida, San Francisco, will examine the individual, social, and cultural factors that serve to either increase or decrease access to support services among Spanish-speaking Latinas with breast cancer. The aim is to determine support program components that are most useful and the type of training that peer support counselors need to enable them to provide adequate support to Latinas with breast cancer. Based on this information, they intend to develop a culturally appropriate outreach and support intervention.
Also addressing the needs of Latinas are Rena Pasick, Ph.D., at the University of California, San Francisco, and Maximiliana Ruiz at the Women’s Cancer Resource Center, Oakland. They will look at the role of lay health workers (LHW), who play an important role in linking the Latina community and the mainstream medical care system. Their study will design optimal LHW models to reduce breast cancer disparities for limited English proficiency in Latina women by identifying and evaluating best practices in breast cancer outreach, education and support.
Peggy Reynolds, Ph.D., at the California Department of Health Services, Oakland (award funded through Impact Assessment, Inc.), and Kim Nguyen from the Asian Health Services will systematically collect information on Vietnamese women working in nail salons in Alameda County. The study will examine health care access and utilization, risk behaviors such as smoking and exercise, and occupational exposures. This information will lay the groundwork for future interventions to reduce breast cancer risk among Vietnamese women.
Also studying an underserved Asian community are Roshan Bastani, Ph.D., at the University of California, Los Angeles, and Zul Surani at the South Asian Cancer Foundation, who will conduct a needs assessment in order to determine how best to design an intervention to address the practical and psychological needs of South Asian women (Indian, Pakistani, Sri Lankan, and Bangladeshi will be surveyed). California has the largest population of any state of South Asian women, who are the third largest Asian group in the US, and little is known about their specific breast health and breast cancer service needs.
Economically disadvantaged, rural communities face significant barriers for access to quality health care. Jeff Belkora, Ph.D., at the University of California, San Francisco, together with Sara O’Donnell and Joy Hardin, Ed.D., from the Cancer Resource Center of Mendocino County and the Humboldt Community Breast Health Project respectively, are examining how to help patients absorb, remember, make decisions, and act upon the information and advice they get from breast specialists. While this topic applies to all patients, the focus of this research will be the Native American and Latina minorities served by these community organizations. These individuals typically face cultural and language barriers in addition to the common rural challenges of poverty, geographic isolation, and health literacy. The team will interview doctors, patients, and health agency staff to uncover what helped or hindered patient understanding, recall, and decision-making. The goal is to use this information to develop a consultation support intervention.
Kimlin Ashing-Giwa, Ph.D., at the University of California, Los Angeles, and Janette Robinson-Flint at Black Women for Wellness received a CRC research planning grant to develop a cooking and eating behavioral trial, grounded in cultural practices, to increase fruit and vegetable intake and reduce the dietary-related risk of breast cancer in the African American community.
Four newly funded CBCRP grants are for either innovative research (IDEA) grants or dedicated to career development. Sonia Ancoli-Israel, Ph.D., at the University of California, San Diego, is studying how chemotherapy may disrupt the body’s biological clock and whether this may increase the symptoms of sleeplessness, fatigue, and depression associated with chemotherapy. She will pilot test a bright light intervention (during chemotherapy) and evaluate the results using questionnaires and sleep recordings.
Linda Fiorentino at the University of California, San Diego, received dissertation funding to also look at the impact of chemotherapy on sleep. She will use cognitive behavioral therapy techniques, including group educational sessions coupled with cognitive strategies to challenge dysfunctional thoughts and attitudes about sleep and daily functioning. Homework assignments in the form of diaries to track sleep patterns and monitor thoughts associated with sleep patterns will also be used.
Leah Karliner, M.D., at the University of California, San Francisco, is addressing the need for physicians to evaluate and incorporate into their medical practice new approaches to care, some of which involve new technologies. The central hypothesis of this grant is that breast cancer patients’ access to new tests and treatments can be improved through techniques designed to help doctors integrate them into medical practice and communicate them to patients. This will require better understanding of physicians’ decision-making processes, which Dr. Karliner will explore through face-to-face interviews with physicians and a mail survey.
Allison Kurian, M.D., at Stanford University received a postdoctoral fellowship award to identify cost-effective strategies for the use of magnetic resonance imaging (MRI) as an addition to mammography for early breast cancer detection. She will use a computer simulation model to generate breast cancer outcomes for individual women and to present their aggregate results at the population level. This approach will be adapted to include the detection ability of MRI, the characteristics of women with dense breast tissue, and women with high inherited breast cancer risk, including the impact of risk-modifying factors. The results will be a measure of estimated mortality reduction of screening MRI, its cost-effectiveness and an optimal screening schedule according to a woman’s age and breast cancer risk level.
The CBCRP funded Laura Esserman, M.D., from the University of California, San Francisco, through a Joining Forces Conference award to address the critical need to improve health care quality. Workshops are planned to incorporate the principles of quality improvement by developing feedback processes, employing novel core data systems, and to provide a blueprint to change behavior at the point-of-care in the patient-physician-provider network. The CBCRP will support the initial meeting to get this new paradigm started.
Community Impact Grants Funded in 2005:
Health Policy and Health Services
A Blueprint for Advancing Quality in Breast Cancer
Laura J. Esserman, M.D.
University of California, San Francisco
Award type: Joining Forces Conference
$25,000
New Breast Cancer Approaches: Integration, Communication
Leah S. Karliner, M.D.
University of California, San Francisco
Award type: IDEA
$150,000
Cost-effectiveness of Breast MRI Screening by Cancer Risk
Allison K. Kurian, M.D.
Stanford University School of Medicine
Award type: Postdoctoral fellowship
Duration: 2 years
$90,000
Disparities
Breast Cancer Risk Profile of Vietnamese Nail Salon Workers
Kim D. Nguyen and Peggy Reynolds, Ph.D.
Asian Health Services and Impact Assessment, Inc.
Award type: CRC Pilot
$119,963
Consultation Recording for Rural Underserved Breast Cancer Patients
Sara O'Donnell; Jeff Belkora, Ph.D.; and Joy Hardin, Ed.D.
Mendocino Cancer Resource Center; University of California, San Francisco;
and Humboldt Community Breast Health Project
Award type: CRC Pilot
$115,391
Partnership to Reduce Cancer Disparities in Spanish Speakers
Maximiliana P. Ruiz and Rena J. Pasick, Dr.P.H.
Women's Cancer Resource Center and University of California, San Francisco
Award type: CRC Pilot
$119,501
Sociocultural, Behavioral, and Psychological Issues
Effect of Bright Light on Fatigue in Breast Cancer
Sonia Ancoli-Israel, Ph.D.
University of California, San Diego
Award type: IDEA
$149,496
Underserved Women with Breast Cancer at End of Life
Beverly Burns, M.S., L.Ac, and Shelley Adler, Ph.D.
Charlotte Maxwell Complementary Clinic and University of California, San
Francisco
Award type: CRC Pilot
$110,669
Treating Insomnia with CBT in Women with Breast Cancer
Lavinia Fiorentino, M.S.
University of California, San Diego
Award type: Dissertation
$76,000
Psychosocial Support Services for Latinas with Breast Cancer
Carmen Ortiz, Ph.D., and Anna M. Nápoles-Springer, Ph.D., M.P.H.
Circulo de Vida and University of California, San Francisco
Award type: CRC Pilot
$100,000
Kitchen Divas: Breast Cancer Risk Reduction for Black Women
Janette Robinson-Flint and Kimlin T. Ashing-Giwa, Ph.D.
Black Women for Wellness and University of California, Los Angeles
Award type: CRC Planning Grant
$10,000
South Asian Women with Breast Cancer: What are Their Needs?
Zul Surani; Roshan Bastani, Ph.D.; and Beth Glenn, Ph.D.
South Asian Cancer Foundation and University of California, Los Angeles
Award type: CRC Pilot
$112,424
