Assistance Publique- Hôpitaux de Paris, université de Paris, France.
Laboratoire de Psychopathologie et Processus de Santé (UR4057), université de Paris, France.
J Gynecol Obstet Hum Reprod. 2021 Sep;50(7):102042. doi: 10.1016/j.jogoh.2020.102042. Epub 2020 Dec 10.
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, 64 % 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 (14 %), and 3) difficult access to care: time to get an appointment (26 %), 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.
在法国，1950 年至 1977 年间，共有 8 万名女性在子宫内接触到己烯雌酚（DES）（DES 女儿）。在管理不孕和妊娠事故为主导之后，监测必须适应宫颈癌和阴道癌风险的增加：严重发育不良的频率增加一倍，以及晚期透明细胞腺癌（CCA）的风险增加。法国最近对宫颈癌筛查进行了两项更改，即在一线筛查和有组织筛查中引入 HPV 检测，应考虑 DES 女儿的特殊情况。我们旨在评估 DES 女儿对先前建议的依从性，并在新背景下提出具体的筛查实践。
一个非营利组织对其在子宫内接触 DES 的成员进行了问卷调查。
在 570 名参与者中，64％的人每年进行 PAP 检测，25％的人在过去三年中进行了检测，11％的人在三年前或从未进行过检测。“退出”的原因是：1）从业者（38％）或患者（30％）忽视了建议；2）疲劳（32％）或对检查的担忧（14％）；3）难以获得护理：预约时间（26％），找医生困难（28％）或费用（6％）。
这些结果涉及到那些对该问题有足够认识的女性，因此她们加入了一个协会。这些结果令人鼓舞，但表明有必要向所有“DES 女儿”和卫生专业人员更好地传播信息。患者协会可以通过向患者和医疗保健专业人员提供帮助，在这个“罕见病”中发挥越来越大的作用。我们建议对这些女性进行筛查，不仅包括宫颈筛查，还包括阴道筛查，并在 65 岁以上和子宫切除术后继续进行，采用细胞学检查，因为 ACC 与 HPV 无关。
