Innovative Models of Care: Meeting Women's Needs
Community Research Collaboration – Pilot Awards
Community Research Collaboration – Full Research Awards
Translational Research Collaboration – Full Research Awards
Eradicating breast cancer as a public health problem requires more than effective prevention, detection and treatment, but also requires the widespread access, dissemination, acceptance and adoption of these approaches throughout all communities. Thus, the BCRP has been committed to funding research on effective ways to bring the results of research on prevention, detection and treatment into communities to serve all women.
Much research on this issue in the past has been conceived of and performed without participation of members of the communities the research is meant to benefit. This approach has historically led to a variety of difficulties ranging from misguided premises to the actual unethical treatment of research subjects. By offering the Community-Initiated Research Collaboration (CIRC) Award, in which research questions are pursued by equal partnerships of research scientists and community agencies/groups, BCRP hopes to fund research that can truly make a difference for communities. Not surprisingly, most of the CIRC research projects focus on this area – how to meet the needs of women of different communities.
The research funded in this area falls into two areas: (1) understanding and reducing barriers for women of particular communities in accessing appropriate breast cancer detection and care; and (2) understanding how to meet the psychosocial needs of women with breast cancer.
Three projects were funded to develop and test educational and screening programs for communities that are not served by current methods: (i) women with disabilities (Mary Smith of the Disabled Community Health Clinic at Alta Bates Medical Center and Carol D’Onofrio of the Northern California Cancer Center), (ii) Samoan Americans (Pat Luce-Aoelua of the National Office of Samoan Affairs and Shiraz Mishra of the University of California, Irvine), and (iii) older women (David Reuben and Roshan Bastani of the University of California, Los Angeles).
A project to be conducted by Arthur Coleman of Bayview Hunter’s Point Health Care Task Force, Daramola Cabral Evins of the San Francisco Department of Public Health and Marion Lee of University of California, San Francisco, is exploring the next step of early detection. Their goal is to identify the individual and institutional barriers that prevent women from receiving appropriate follow-up of abnormal mammograms.
Finally, a team of agencies that provide psychosocial support services to women with breast cancer (Mitch Golant of The Wellness Community, Carol Kronenwetter of Cancer Support Community and David Spiegel of Stanford University) will study three different models of support groups in an attempt to understand how the various elements of these services help women and to understand their physiological effects.
These research projects are strongly translational as they promise to increase our capacity to deliver needed services to women in ways that are culturally and socially acceptable.
Community Research Collaboration – Pilot Awards
Study of Inadequate Follow-up of Mammographic Abnormalities
Arthur Coleman, M.D.
Bayview Hunter’s Point Health Care Task Force
Daramola Cabral Evins, P.A., M.P.H., Dr.P.H.
San Francisco Department of Public Health
Marion Lee, M.P.H., Ph.D.
University of California, San Francisco- Department of Epidemiology and
Biostatistics
The Bayview Hunters Point Health Care Task Force, a community-based grass roots initiative, was established in October, 1995 to provide guidance, information, and follow-up on the early detection of breast cancer among African American women in the Bay View Hunters Point Community of San Francisco. As we marked our second anniversary in the Fall of 1997, the BVHP Health Care Task Force focused on the low breast cancer survival rate among African American women. The Task Force discussed the issue of breast cancer survival with Dr. Daramola Cabral Evins, Cancer Epidemiologist with the San Francisco Department of Public Health, and established a collaborative effort with her to research the matter. Our long range goal is to increase the proportion of women who receive the recommended follow-up for mammographic abnormalities, thereby improving the survival of women with breast cancer. Our general hypothesis is that factors in the personal and social environment of the women, as well as in the health care delivery system, may be associated with inadequate follow-up of mammographic abnormalities. This pilot study aims to identify and describe, from the patient's perspective, factors that create barriers to timely, adequate follow-up of abnormal mammograms. This information will guide the development of culturally sensitive and appropriate questionnaire items specific to African American women to identify factors in the personal and social environment of the women, as well as in the health care delivery system that may he associated with inadequate follow-up of mammographic abnormalities.
In pursuing this area of research, we seek to analyze a perplexing question, an area of concern voiced by the African American community, that is, why is the breast cancer mortality rate higher in African American women compared to whites, and what role does inadequate follow-up play in explaining these racial/ethnic disparities? We also address the CIRC priority area, innovative models of care, by exploring the sociocultural, behavioral, and psychological issues that impact the health seeking behaviors of African American women after being informed of an abnormal mammogram result.
We will conduct an extensive review of the literature including literature from other disciplines such as psychology. We will then conduct in-depth interviews with breast cancer experts and conduct six focus groups with African American women to identify key concepts and factors to help assess barriers that may he associated with inadequate follow-up of abnormal mammograms among African-American women. Based on this work, we will develop a culturally-specific survey questionnaire. We will pilot tests the questionnaire in a random sample of 100 women with abnormal mammograms, 50 that received adequate follow-up and 50 that did not receive adequate follow-up of abnormal mammograms within 8 weeks of the due date. Based on the outcomes of this work, we will refine our study hypotheses and prepare the full CIRC application.
The earlier a breast cancer is diagnosed and treated, the greater the likelihood of long-term survival. Untimely follow-up may negate the benefits of early detection through mammography screening, and inadequate follow-up of abnormal mammogram results might explain some of the racial/ethnic differences in breast cancer survival. We expect that improving timeliness of follow-up after abnormal mammograms will result in improvements in breast cancer survival among African American women.
Community Research Collaboration – Full Research Awards
Do Cancer Support Groups Reduce Physiologic Stress?
Mitch Golant, Ph.D.
The Wellness Community
Carol Kronenwetter, Ph.D.
Cancer Support Community
David Spiegel, M.D.
Stanford University- School of Medicine
This study is designed to evaluate the strengths and weaknesses of two different community-based support group interventions for breast cancer patients. We plan to compare them with a model developed in the university setting, study which aspects are most effective, and who benefits the most. This proposal is based on a year-long collaborative effort with The Wellness and Cancer Support Communities, two major cancer support programs providing group interventions.
This proposal is responsive to the BCRP priority issue: Innovative Treatment Modalities. We plan to apply careful methods to understanding the effectiveness of two well-established support group programs in Northern California. This will allow us to refine and improve group interventions, and better match specific ones to those who will most benefit. We have devoted the past year to developing a close working relationship between these two community programs and the Psychosocial Treatment Laboratory in the Department of Psychiatry & Behavioral Sciences at Stanford University School of Medicine. We have already done research together which shows similarities and differences in these group programs. We have also built the mutual trust necessary to allow for such systematic study. All three programs have demonstrated a strong willingness to work closely with one another, and to learn from one another. This program emphasizes diversity and community-university collaboration in developing better group support services for breast cancer patients.
We will ask 96 women with recently diagnosed breast cancer at The CSC in San Francisco and The Wellness Community—East Bay in Walnut Creek to participate in the study. They will be randomly assigned (by a process like tossing a coin) at each site to their typical group program or Supportive/Expressive group therapy supervised by Stanford but administered there. We will ask participants to fill out questionnaires about their emotional distress, means of coping with cancer, social and family support, background, and evaluation of their group experience every four months for a year. Their physiological response to stress will also be measured using saliva samples. We will use this information to determine how well these groups work, and for whom they work best.
There is a growing body of evidence that participating in support groups improves the quality of life of breast cancer patients. The existence of community support programs provides a means of offering such effective support rapidly and inexpensively, making it available to diverse populations of breast cancer patients. The combination of this community-based effort and university research program provides the potential for improving all of these programs and providing evidence to support health policy changes. This could lead to programs of group support throughout the state of California, offering comfort, guidance, and support to all women coping with breast cancer.
Samoans and Breast Cancer: Evaluating a Theory Based Program
Pat Luce-Aoelua, M.S.
National Office of Samoan Affairs
Shiraz Mishra, M.D., Ph.D.
University of California, Irvine- Center for Health Policy and Research
We address the Breast Cancer Research Program’s priority area of public education and early detection through the use of new methods of dissemination of information about breast cancer to Samoan women, the indigenous people of the U.S. Territory of American Samoa. Despite the high site-specific incidence of breast cancer and low levels of both awareness and utilization of screening and early detection examinations, no educational programs have been tested in this population. We will implement and evaluate an innovative, theory-based, culturally sensitive and linguistically appropriate breast cancer control educational program ("intervention") specially developed for Samoan women. The specific aims are, first, to implement and evaluate (using behavior change theory) the intervention’s effectiveness in enhancing knowledge, modifying attitudes, and most importantly, effecting positive behavior change. Second, to identify individual and structural factors that facilitate or impede behavior change. We build on an ongoing National Cancer Institute (NCI) sponsored cancer control research study among Samoans conducted collaboratively by the University of California, Irvine (UC Irvine) and the National Office of Samoan Affairs (NOSA), a community-based Samoan service organization situated in Carson, California.
The intervention consists of three components: specially developed English- and Samoan-language educational materials; skills building exercises; and, interactive group discussions. The intervention, designed in four modules, address different aspects of breast cancer (i.e., risk, severity, susceptibility, screening and early detection exams). The materials and the skills building exercises necessary to model and role play new behaviors will supplement group discussions. The outcome of primary interest is the receipt of a mammogram between the pretest and posttest survey. Outcomes of secondary interest are the appropriate conduct of breast self-exams, receipt of clinical breast exams, and positive changes in knowledge and attitudes.
We will conduct the study in two contiguous Southern California counties, Los Angeles and Orange. Samoan-speaking churches located in these two counties will form the study sites. We will randomly assign matched and paired study sites to the two study groups, Experimental and Control. Initially, we will select 600 Samoan women from the study sites. At the study’s end, we expect the final sample size to include approximately 480 women (240 women per study group). We will conduct a pretest and posttest survey. Between the pretest and posttest surveys, we will administer the intervention to the Experimental group. We will administer the posttest survey eight months after the pretest survey. Analysis of the survey data will provide a quantitative evaluation of the program’s effectiveness. After the posttest survey, we will conduct focus groups with women who changed their behaviors and those who did not. The focus group data will provide more in-depth explanations about factors important for behavior change.
This collaborative research project has several benefits. It addresses a crucial community identified cancer control need of Samoan women. The project enhances NOSA’s research capacity providing it with additional skills and experience to develop procedures and infrastructure needed for in-house monitoring of prevention efforts. Due to the unique study design, Samoan women have an opportunity to make an impact on various aspects of the study as program developers, implementers and evaluators. Furthermore, the research project will provide crucial insights into the applicability and appropriateness of the behavior change theory and research methods for this community. Lastly, the behavior change theory, educational program, evaluation protocol and associated methods will be presented in a didactic monograph designed to be used as a guidebook for other cancer control programs through relevant community-based organizations that work with minority, hard-to-reach populations.
Increasing Breast Health Access for Women with Disabilities
Mary E. Smith, M.S., C.R.C.
Disabled Community Health Clinic at Alta Bates Medical Center
Carol D’Onofrio, Dr.P.H.
Northern California Cancer Center
Women with disabilities have been neglected in breast cancer statistics and in local, state, and national initiatives aimed at earlier breast cancer detection. Although numerous obstacles may limit the access of disabled women to screening services, nothing is known about the extent of the problem and little research has examined the issues involved. With scientific partners, Breast Health Access for Women with Disabilities (BHAWD), a coalition of community-based agencies formed in 1995 in San Francisco’s East Bay region, proposes to address this research gap.
To obtain data on the extent and nature of the problem, this project will undertake original analyses of data from a large national survey of the general population and a related follow-back survey of respondents with disabilities. A complementary telephone survey of 1,000 women with physical disabilities who live in Alameda or Contra Costa County will be conducted to determine whether results from the national survey describe issues at the local level, to explore barriers to screening in greater depth, and to evaluate BHAWD efforts to improve screening access. While the survey work is in progress, BHAWD partners will draft a manual to share what has been learned to date from their community-based project and to advise others on how to organize similar initiatives. In year 2 of the project, four Task Forces of community leaders in the disability and breast cancer movements and a group of physician consultants will review survey findings and the draft manual, and then recommend additional ways to improve screening access. In the last project year, the manual will be revised and distributed to 160 disability and breast cancer leaders in communities throughout California. Persons who receive the manual will be asked to complete a questionnaire about their interest in starting a project like BHAWD in their own community and the obstacles they anticipate. Throughout the project, interested individuals will be able to review findings from this project and BHAWD materials on a special website. This and other aspects of the research design are intended to strengthen and expand the BHAWD collaboration.
Survey results will provide important data about the rates at which women with differing functional limitations obtain screening mammography and clinical breast exams, practice breast self-examination, and encounter specific barriers to each type of screening. These data will be useful in meeting the needs of this special population and in developing policies and programs to ensure that breast screening education and services are accessible for all women, regardless of disability. Development of the BHAWD manual will provide a practical resource for others who want to initiate a similar project, as well as information about problems that may arise and how these can be addressed. Responses to the questionnaire about the manual will provide the basis for planning targeted dissemination of the BHAWD project.
Translational Research Collaboration – Full Research Awards
Does Mobile Mammography Increase Screening in Older Women?
David B. Reuben, M.D.
University of California, Los Angeles- School of Medicine
Roshan Bastani, Ph.D.
University of California, Los Angeles- School of Public Health
Despite the consensus that older women should receive screening mammography, screening rates remain suboptimal. Although mobile mammography has the potential of increasing mammography rates in older women, its effectiveness in this population is essentially untested. We have designed a randomized clinical trial to determine the additional benefit of offering on-site screening mammography in addition to a health education intervention to low-income, ethnically diverse, urban-dwelling older women.
This study will recruit low-income, ethnically diverse, urban-dwelling, elderly women to participate in the study by holding Senior Women's Health Days at senior meal sites and other sites where older persons congregate. At all sites, participants will receive a health education intervention designed to increase mammography. At a randomly selected 50% sample of sites, participants will be offered on-site mammography using a mobile unit. We will then conduct follow-up interviews to determine the use of mammography services in both groups. The research will address both the effectiveness and the cost-effectiveness of patient education alone compared to patient education plus on-site mammography provided by a mobile van. The research involves a unique partnership between a university (UCLA), a private research entity (Rand Corporation), and two community organizations (the City and County of Los Angeles Area Agencies on Aging) and brings together expertise in clinical, social-behavioral, and health care economics research.
The interventions that are developed and tested in this study can be readily incorporated into at-risk Medicare health plans or other large health care organizations to facilitate earlier detection of breast cancer. The study's outcomes should also influence public policy regarding support of mobile mammography and health education efforts and will provide important information for communities and health care organizations as they plan to optimize breast cancer screening for older women.
