Management of DES-Exposed Patients : Psychological Support

Screening and Management of Diethylstilbestrol Exposed Offspring

Summary

Prenatal diethylstilbestrol (DES) exposure in pregnancy has been associated with adenocarcinoma of the vagina and/or cervix as well as teratogenic abnormalities of the genital tract in both female and male offspring. DES Action groups are alerting the public to the dangers inherent in being a `DES daughter‘ or a `DES son‘. Family physicians must be able to reassure those patients who are not DES offspring, manage those who are, and detect those who didn’t know they were. The screening and management of DES problems, including history-taking, physical examination, relevant laboratory exams and consultation for diagnosis and treatment of both male and female patients are discussed. In addition, psychological support, patient education, longterm follow up, the management of contraception and pregnancy in DES daughters, and infertility in DES sons are considered.

Management Of DES-Exposed Male Patients : Psychological Support

Screening and Management of Diethylstilbestrol Exposed Offspring, US National Library of Medicine, National Institutes of Health, The College of Family Physicians of Canada, NCBI PubMed PMC2153721, 1984 Aug; 30.

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Helping families cope with DES-induced abnormality and pathology involves dealing with the family’s and patient’s anger at the medical profession for having led them into this situation. The family doctor has to function in an agonized setting where the cardinal rule ‘first do no harm‘ has been violated.

It also involves helping assuage the mother’s guilt at having collaborated in a treatment which has brought hazard or harm to her children. She must be made to understand that the responsibility rests with the medical profession, one of whose members prescribed a treatment that was generally considered appropriate at the time. A good support for the patient and family is DES Action Groups which provide information and readily available self-help groups.

Where genital abnormality or genital surgery has led to sexual problems, the family physician may have to refer the patient to sexual counsellors and therapists with experience in sexual therapy and rehabilitation.

Conclusion

The seventeenth-century philosopher, Rene Descartes, called medicine “a science that was forced into practice too early“. Implications in some articles we have read in the public press are that doctors gave DES to pregnant women out of some combination of callousness, stupidity and monetary greed. In fact, doctors gave DES to pregnant women who were likely to suffer a spontaneous abortion because it was believed DES might prevent miscarriage.

In retrospect, however, it is important to try and understand why doubleblind studies done in the early 1950s, concluding that DES was ineffectual in maintaining pregnancies at risk, were largely ignored. One answer seems to be that physicians as a group rely too heavily on the pharmaceutical industry’s advertising and not firmly enough on objective research in evaluating the medications we use. The medical profession’s tragic experience with DES should lead us to constantly examine the process of drug evaluation and take steps to control the pharmaceutical industry’s influence on evaluative trials and the dissemination of drug information.

Reading the DES Action literature, one sees, understandably, a lot of anger towards the medical profession. However, despite this background of bitterness, one frequently hears DES patients’ unqualified expressions of appreciation and admiration for the doctors who are presently caring for them.

It is incumbent upon us not to neglect the detection and treatment of DES-induced abnormality and disease. The tools for this task are continual attention to the facts of DES-induced disease as they continue to emerge, and the two basic maneuvers of sound medicine: a good history and a thorough physical examination.

Michael Malus, Alex Ferenczy, 1984.

Download the full paper on NCBI.

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