From 1941-1971 nearly 5 million women were exposed to diethylstilbestrol (DES) during pregnancy, a drug thought to reduce risk of miscarriage. This exposure has been established as a significant contributor to increased breast cancer risk in mothers who took the drug, vaginal and cervical cancer among daughters who were exposed in-utero, as well as a myriad of reproductive abnormalities in both daughters and sons. There remains concern that as the cohort mothers, daughters and sons age, further risks will be identified.
The aims of this project are: 1) Document barriers to appropriate identification, diagnosis and treatment of DES-associated medical conditions among consumers and health care providers. 2) Design, implement and evaluate a DES education intervention which will reduce barriers to identification, diagnosis and treatment in one California community. 3) Disseminate the intervention to other California communities. The intervention to be tested has been designed to be easily implemented in other communities at low cost. It will use existing social networks, known to be important conduits of information, to pass updated information on the need to seek information about possible DES exposure, and information about how to minimize the impact of possible exposure through health behaviors such as frequent screening for vaginal and cervical cancer and breast cancer, and informing physicians about exposure when initiating pregnancy. If successful, this intervention model stands to make an important contribution to methods of health education for increasing knowledge to those who treat potentially exposed persons, using a network approach through patients, through providing written information and kits for updating patient history forms to include DES exposure history, through special Continuing Medical Education Programs, and by disseminating a DES curriculum to medical schools throughout California. Significantly, this research will be carried out by a collaboration between DES Action, and the DES Cancer Network, consumer groups which have been serving as the primary sources of education and consultation for consumers and health providers for the past 20 years, and a team of experts in epidemiology, communications and public health prevention education associated with three major universities: The University of California, Berkeley, The University of California, San Diego, and Stanford University. In addition, this research group will utilize several outstanding resources: 1) The California Behavioral Risk Factor Survey, 2) The Cancer Information System (Northern Region), and 3) Consumer groups where a large number of DES exposed women may be concentrated.
