In total, 80,000 women were exposed to diethylstilbestrol (DES) in utero in France (DES daughters) between 1950 and 1977. After having been dominated by the management of infertility and pregnancy accidents, monitoring must adapt to the increased risk of cancer of the cervix and vagina: doubling of the frequency of severe dysplasia and a risk of late clear-cell adenocarcinoma (CCA). Two recent changes in cervical cancer screening in France, the introduction of HPV tests in first-line screening and organized screening, should consider the particular situation of DES daughters. We aimed to assess the compliance of DES daughters with previous recommendations and propose specific screening practices in the new context.

A non-profit organization carried out a questionnaire survey of its members who were exposed to DES in utero.

Among the 570 participants, 63% had annual PAP tests, 25% within the last three years, and 11% more than three years before or never. The reasons for "dropout" were: 1) ignorance of the recommendations by practitioners (38%) or patients (30%), 2) fatigue (32%) or apprehension of the exams (15%), and 3) difficult access to care: time to get an appointment (29%), difficulty in finding a doctor (28%), or cost (6%).

These results concern women who were sufficiently aware of the issue to be a member of an association. They are encouraging but show a need to improve the dissemination of information to all “DES daughters” and health professionals. Patient associations can play a growing role in this “rare disease” by addressing patients and healthcare professionals. We propose that screening for these women include an annual screen of not only the cervix, but also the vagina, and that it continues beyond 65 years of age and after hysterectomy, with cytological examination, because ACC is unrelated to HPV.