Existing data on breast cancer in African-American women

Abstract

Much of what is known about breast cancer in African-American (AA) women is based on existing cancer surveillance data. Thus, it is important to consider the accuracy of these resources in describing the impact of breast cancer in AA populations. National cancer surveillance data bases are described, their most recent findings are presented, their limitations are outlined, and recommendations are made for improving their utility. Breast cancer characteristics have been studied well in urban (but not in rural) and Southern AA populations. The recent Surveillance, Epidemiology, and End Results (SEER) Program expansion and the continued improvement of state cancer registry operations will provide opportunities to study larger and more diverse AA subpopulations. Recommendations for improving the utility of surveillance data bases include adding new items to better describe correlates of advanced stage at diagnosis and reduced survival of AA women with breast cancer by linking surveillance data bases with other large data bases to provide area-level socioeconomic status, health insurance status, and retrieving new information about patient comorbidities and biomarkers from medical records; improving the completeness and accuracy of treatment and survival information already collected for all patients; working to improve the dissemination of appropriate cancer data to nonresearch consumer communities, including clinicians, patients, advocates, politicians, and health officials; and the development of new training programs for cancer registrars and researchers. The continued improvement of cancer surveillance systems should be considered important activities in this research agenda, because these data will play a far-reaching role in the prevention and control of breast cancer in AA women.