Underserved Women with Breast Cancer at End of Life

Institution: Charlotte Maxwell Complementary Clinic
Investigator(s): Beverly Burns, MS, BA, - Shelley Adler, Ph.D. - Beverly Burns, MS, BA, -
Award Cycle: 2004 (Cycle 10) Grant #: 10AB-1100 Award: $0
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 10AB-1101 -

Initial Award Abstract (2004)
[This abstract describes an intended research project. Beginning, July 1, 2004, the team will utilize a small planning grant to gather necessary preliminary data, and strengthen the research plan and the scientific and community collaborations, in order to submit a CRC Pilot application in early Spring, 2005. Funding for this research depends on the success of that competitive application.]

Our research team is a collaboration of university and community-based women's health providers and researchers who will study experiences at the end of life for underserved women with metastatic breast cancer. End-of-life care, in general, is poor in the U.S. For low income, underserved women this problem is more acute since the risk of recurrence and death is higher and their needs are less likely to be met. We will interview 10 women with metastatic breast cancer who are clients at CMCC, as well as their physicians, CAM providers, and informal caregivers. By focusing on the women's values, needs, expectations, and concerns we hope to find ways to support and strengthen a sense of meaning as they die. Additionally, we will focus on the communication that occurs between the clients and the providers during the end of life. Finally, by doing these interviews and providing a distilled version of the conversations (an ethical will) to the women, we hope to develop an intervention which may enhance quality of life.

Our research questions are:
  1. What are the beliefs, values, concerns, expectations, and goals about end of life from the viewpoints of underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?
  2. What communication about end-of-life issues take place among underserved women with breast cancer, their physicians, CAM practitioners, and informal caregivers?
  3. Can we take the information obtained from the interviews and distill it into a short (2-3 pages) coherent document (an ethical will) that might enhance the sense of meaning for a woman as she dies?
This project consists of recruiting and interviewing 10 underserved women with metastatic breast cancer from among the clients at the community-based Charlotte Maxwell Complementary Clinic. The physician (oncologist), CAM provider, and informal caregiver that the client has selected as being most integral to her care will also be interviewed. Tapes of these interviews will be transcribed and their contents studied by the research team so that a document can be created--the ethical will--which will be returned to the client. Each woman will have the opportunity to make changes to the document and then to share it with anyone she wishes. This pilot project will develop and test the feasibility of the intervention to be evaluated in the full CRC grant.

The research team consists of two women with cancer who were low-income at the time that they were diagnosed; two women who are healthcare providers for underserved women with breast cancer; and two researchers who have focused their work on underserved populations as well as women with breast cancer. We have formed a uniquely qualified team to study and work with an underserved community population; we will form a five-member advisory committee of CMCC clients with breast cancer; and our long-term goal is to develop a patient-centered model of culturally-appropriate end-of-life care that takes into account that the burden of breast cancer is heavier for low income women, particularly low income women of color.

Final Report (2006)
The California Breast Cancer Research Program, on the basis of its scientific peer review and the California Breast Cancer Research Council’s programmatic review, awarded a research assistance grant to the University of California, San Francisco, and the Charlotte Maxwell Complementary Clinic to develop further the pilot Community Research Collaboration application submitted for CBCRP’s funding cycle X: “Underserved Women with Breast Cancer at End of Life.” The purpose of the award was to enable the Co-PIs to address scientific and collaborative issues raised during the scientific peer review of the pilot CRC application.

We addressed the following issues in our work: the conceptual framework of end of life issues to be used in the study; the manner in which the analysis will investigate interrelationships among the sources of data to be gathered during the study; recruitment issues regarding physician and complementary and alternative medicine practitioner participation; and the issue of the acceptability by patients of the proposed interview instruments. We strengthened the collaborative elements of the application, including specifying a conflict resolution mechanism for disagreements which may arise between the partners and describing and improving the plans for translating results, facilitating learning, and for informing others about the results of the study.

We submitted a revised Concept Paper and, subsequently, a revised pilot CRC application, which, due to the work facilitated by the research assistance resources provided by the planning grant, resulted in award funding.