The goal of this collaborative project with the National Cancer Institute and the National Institute of Child Health and Human Development is to raise levels of awareness and knowledge, change attitudes, and to reduce barriers to action regarding exposure to diethylstilbestrol (DES) and its consequences among targeted public and medical professional audiences in the Northeast, as well as to improve early detection, diagnosis, and treatment for several medical conditions associated with exposure to DES. Intervention sites will be on Long Island, New York. Target groups for education include (1) individuals who are aware that they have been exposed to DES (including those identified through enrollment in DES registries, cohort studies or relevant organization, as well as others identified through enrollment in DES registries, cohort studies or relevant organizations, as well as others identified through this project); (2) individuals unaware of their exposure to DES; and (3) health professionals who are likely to have contact with DES exposed individuals. The proposed project will include the following activities: (1) the formation of a panel of medical experts and consumer representatives consisting of medical experts, health education specialists, and consumer representatives (DES Cancer Network, and DES Sons) to devise state of the art standards for diagnosis and care for DES exposed individuals and to oversee efforts to disseminate the standards of care; (2) the conduct of baseline and follow-up surveys of samples of the three target audiences to provide information concerning existing levels of awareness, knowledge, practices and perceived barriers to be incorporated into the interventions and provide data for evaluating the effectiveness of interventions in each of these groups; (3) the establishment of a DES hotline which will be available for the public in both communities and wills serve as a vehicle for identification and referral of newly identified DES individuals; (4) the evaluation of the relative effectiveness of high versus low intensity interventions for both DES exposed individuals and health care professionals, with the inclusion of process evaluation measures to better assess the most effective components of the interventions; (5) the production of a set of educational materials which will serve as a basis for the interventions; and (6) the establishment of linkages with medical schools, Departments of Public health, and community organizations that will enable the continuation of these DES education efforts after the funding period. This proposed project builds on substantial expertise provided by the multidisciplinary team of investigators that has been assembled.
| Duke, S S; McGraw, S A; Avis, N E et al. (2000) A focus group study of DES daughters: implications for health care providers. Psychooncology 9:439-44 |
