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    Research Grants Awarded

    Long Term Quality of Life in Black Women Breast Cancer Survivors

    Study Section:
    Breast Cancer Disparities

    Scientific Abstract:
    This research is a study of Health-related Quality of Life (HRQoL) for Black Women Breast Cancer Survivors (BWBCS). The specific aims for this study are: 1) To report findings of four HRQoL instruments (the Functional Assessment of Cancer Treatment-Breast (FACT-B), the RAND SF-36, the Ladder of Life Scale, and the Life Stress Scale), overall and in cultural/ethnic subgroups of long-term Black women breast cancer survivors (BWBCS); 2) to identify socio-demographic and clinical effect modifiers of the same four HRQoL instruments from among selected socio-demographic and clinical history indices, including but not limited to the following: stage at diagnosis, treatment, age, education, income, religion and practice status of that religion, marital status, co-morbidities, family history, quality of the first encounter with the health care system, and clinical information; 3) to estimate the nature and significance of the relationships (if they exist) between non-medical life stressors as measured by the Life Stress Scale and the other three HRQoL instruments; and 4) to determine the cultural appropriateness of four (4) existing HRQoL instruments in a population of long-term BWBCS using qualitative methods. The rationale and significance of this study is based on the fact that breast cancer is the most common form of cancer among women. With improvements in screening, detection, and treatment Black women are surviving their disease. This survival brings with it a new set of challenges: long-term effects of the disease or its treatment and their impact on HRQoL. Among BWBCS it has been suggested that the following challenges prevail: social forces of racism, cancer stigma, cultural expectations, beliefs that breast cancer is a ?white women?s? disease, as well as the fear, hopelessness, pessimism and fatalism about the disease. However these insights are not yet translated into culturally sensitive strategies for providing health services to BWBCS. The guiding framework being used in this study is an investigator-developed Quality of Life framework. The descriptive design for this pilot study will be conducted in two-phases. Phase 1 addresses Study Aims 1, 2 and 3, where 100 BWBCS will complete four HRQoL instrument assessments (the Functional Assessment of Cancer Treatment-Breast (FACT-B), the RAND SF-36, the Ladder of Life Scale, and the Life Stress Scale). Phase 2 addresses study Aim 4 where 50 additional BWBCS will discuss the cultural appropriateness of the same four HRQoL instruments in a focus group setting. Quantitative and qualitative analysis will be conducted on data obtained from Phase 1 and Phase 2 and are specific to each study aim. Much can be learned from what BWBCS have to tell about their experiences surviving breast cancer and this study affords them this opportunity. The knowledge gained from this study can only improve nursing and health care to the increasingly culturally diverse patients, in general, and to Black women with breast cancer, in particular.

    Lay Abstract:
    Breast cancer is the most common form of cancer among women in the United States. Black women are usually diagnosed at an earlier age and quite often with a more complicated disease making the treatment and side effects different. Now that more Black women are getting mammograms, their cancers are being diagnosed earlier and these women are living longer lives. This living does not come without its problems: early menopause, hair loss and other problems resulting from being diagnosed with and surviving the treatments for breast cancer. However articles about Black women?s quality of life after having breast cancer cannot be found in the journals read by nurses and doctors. This lack of information leaves doctors and nurses not knowing how to care for Black women who have survived their breast cancer. The purpose of this study is to invite a group of Black Women Breast Cancer Survivors (BWBCS) to complete four health-related quality of life (HRQoL) instruments. Another group of BWBCS will be invited to attend focus groups to talk about these instruments and how appropriate they are in measuring quality of life for Black women. BWBCS are rarely given an opportunity to reflect on their experiences, nor are they given the opportunity to share their insights with the health care community. This study gives them this opportunity. The knowledge gained from this study can only improve nursing care and health care to the increasingly culturally diverse patients, in general, and Black women with breast cancer, in particular.