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