Improving Breast Cancer Services for African American Women Living in St. Louis: Survivors Tell Their Story

Background and Purpose: The 5-year relative breast cancer survival rate for white women is 90% compared to only 78% for African American women (Siegel et al., 2011). The time between a breast cancer diagnosis and surgery or treatment is a crucial intervention period for optimal impact on health outcomes (Davis et al., 2009). Women who are medically underserved, characterized by lower income, socioeconomic status and education level are less likely to receive timely care. Data from the city of St Louis Department of Health reports that eight zip codes located in north St Louis, which are 89% African-American, are disproportionately characterized by the lowest life expectancies in the city as a whole (Gordon, 2008).  The primary aim of this study was to identify systems-level shortfalls in the breast cancer treatment of African American women living in north St Louis that help to explain their disproportionate rates of mortality compared to white women, with an ultimate goal of eliminating this disparity.

Methods:  This community-based participatory research (CBPR) project with one academic and four provider partners used a qualitative study design to conduct face-to-face interviews with 100 African-American breast cancer survivors who reside in the eight north St Louis zip codes who were diagnosed between 2000 and 2007. All were diagnosed in a federally-qualified health center and treated in St. Louis hospitals that treat women in the Breast and Cervical Cancer program. Semi-structured interview questions were designed to collect treatment history in the survivors’ own voices. Key domains included determining the course of breast cancer treatment for this sample, identifying key points at which women were unable to complete treatment and detecting information used to improve services at the three provider facilities.

Results:  Based on data obtained for the project from the Missouri Cancer Registry approximately 900 women from the eight zip codes of north St Louis were diagnosed with breast cancer between 2000-2007, 432 of whom are still living. We completed individual semi-structured interviews with 100 women. Key findings indicate that women from this sample are more likely to complete treatment if they receive assistance to connect with a surgeon or oncologist by a patient navigator.  Yet, while navigators are in place, we found that navigators are not introduced to women on site, but instead given their telephone numbers for future follow-up. Almost 50% were lost to contact by the navigators. Furthermore while women may complete surgery and chemotherapy, the number of women who reported undergoing radiation was low. Alarmingly, women spoke of radiation therapy as an option like breast reconstruction, rather than associating it with survival.

 

Conclusions and Implications: Our study highlights two potential changes in social service delivery that could be expected to decrease the mortality disparity: (1) to train health social workers to link women with a patient navigator on site (2) to train health social workers, case managers, nurses and physicians to explain radiation as a means of increasing survival.