Between 2010.09.10 and 2010.10.10, the National French Agency for the Safety of Health Products (AFSSAPS) conducted a DES survey aimed at assessing the knowledge of gynecologists and obstetricians regarding the complications associated with Dietylstilbestrol exposure as well as evaluate their expectations in terms of information campaign about this issue.
This survey was conducted in collaboration with the French National Federation of Medical Gynecology Colleges, the National College of French Gynecologists and Obstetricians, and the French Company and Gynecology Group for the Study of In vitro fertilization in France.
A total of 204 completed questionnaires were returned. Gynecologists who responded were generally aware of the consequences of DES exposure with 71% of them having at least one patient exposed to Diethylstilbestrol in utero.
AFSSAPS DES survey results
Analysis of the responses regarding the level of knowledge about DES exposure suggested that:
- A majority of practitioners have an imperfect / limited knowledge of its consequences
- Investigating DES exposure in situations which suggests potential exposure is not systematic
- Genital anatomic abnormalities in boys exposed in utero are not well known by gynecologists
- Knowledge of the risks faced by the third generation is very limited, yet it is important to continue monitoring these children to assess the multi-generational effects
- The “memory” of the consequences of DES exposure is lost with the new generation of doctors
- Recent data on the third generation is largely unknown
- Almost half of the practitioners who responded requested a new DES information campaign
AFSSAPS DES update June 2011
As a result of the 2010 survey, AFSSAPS decided to publish a DES update aimed at DES exposed individuals and health professionals. The publication released in June 2011 emphasizes the gynecologists and obstetricians’ crucial role in recognizing DES exposure, informing their patients about its consequences and referring them to specialists for adequate care and monitoring. It also highlights the crucial role of DES patients in handing down the “record” of their exposure to the next generations.
The AFSSAPS 2011 DES update covers the following topics:
- DES historical facts
- Current issues
- Risks associated with DES exposure
- Breast cancer risks
- Post adolescent psychiatric disorders – Later this year AFSSAPS plans to conduct a public hearing for experts to reexamine their facts on this matter.
- Risks for the 3rd generation
- How to screen DES exposure
- Routine medical follow-up
- Recommendations for fertility problems
- DES pregnancy care
As a DES daughter and mother of 3 girls who may also be affected (only time will tell …), I really welcome these efforts from AFSSAPS and I believe this is a very important document which will serve as a reference for years to come. The results of the survey and the update are available to download from the AFSSAPS website in French. AFSSAPS is circulating this information through professional organisms to reach out to health professionals.
I sincerely hope AFSSAPS and the French government will follow through with additional efforts to spread the word, and reach out not only to all doctors, but also to the general public. With the recent Mediator scandal maybe AFSSAPS doesn’t want to make too much noise about the DES tragedy but at the end of the day it is our health and our children health which are at stake and we have the right to know.
The AFSSAPS DES Update 2011 was promised by one of their doctors who attended the DES conference in Paris in November 2010. It is very widely based on the Réseau DES France publication which followed the conference. It is an official text for gynecologists, obstetricians and doctors. The English translation has been coordinated by Réseau DES France and reviewed by Carol Devine (DES Australia NSW), Pr Tournaire and myself.
Thanks go to Pam Solere for her trust and encouragements.