It is estimated that between 5 and 10 million people
were exposed to DES in the United States between 1938 and 1971. These include
women who were prescribed DES while pregnant and the children of those pregnancies
(5,16,29). There are three reasons to identify persons
who have been exposed to DES:
- To take immediate action to protect their health
- To inform them of their exposure, so that if ongoing research identifies new screening or treatment recommendations, they can receive appropriate care
- To inform their children and adult grandchildren, so that they can get immediate care and be aware of their exposure for the future
The youngest women who were prescribed DES while pregnant are now entering their 50s, but most are elderly. If they are not asked about DES now, the opportunity to identify their sons, daughters, and grandchildren as exposed to DES may be lost forever.
No centralized record exists of women prescribed DES while pregnant. When problems with DES were discovered, public education campaigns were undertaken, and physicians were encouraged to inform patients. However, no systematic notification of persons exposed to DES was possible. Many persons exposed to DES remain unaware that they have been exposed, or that research is still ongoing to determine the health implications of exposure.
Nurses can play a key role in identifying DES-exposed persons. Some important things to keep in mind are:
- Specific questions should be included as part of all health history forms. This is particularly important for women who were of reproductive age between 1938 and 1971, as well as for persons born during those years.
- Some persons will be aware that they or their mother were prescribed
DES. In other cases, they will know that they or their mother had a
history of miscarriage, premature deliveries, or bleeding during pregnancy
and possibly took medication during pregnancy between 1938 and 1971.
A list of brand names may be helpful.
- If it seems possible that a patient was exposed to DES, it is best to obtain obstetrical records to confirm exposure. However, because exposure occurred many years ago, these records are often unavailable.
- Some women are identified as DES Daughters because of typical finding discovered during gynecological examination, including vaginal adenosis, cervical abnormalities, or a T-shaped uterus, usually identified by ultrasound or hysterosalpingogram.
- Women diagnosed with clear cell adenocarcinoma (CCA) of the vagina and cervix before the age of 40 years are highly likely to be DES Daughters.
- Any woman who has a biological daughter diagnosed with clear cell adenocarcinoma (CCA) of the vagina and cervix before the age of 40 is highly likely to have been prescribed DES during her pregnancy.
- Patients may be particularly willing to explore possible exposure to DES when they are being evaluated for conditions that are sometimes related to DES exposure, such as breast cancer (women prescribed DES while pregnant) and infertility (DES Daughters).
For a complete list of the numbered citations on this page see DES References.
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