Implementation of a Guideline for the Diagnosis of Fetal Alcohol Syndrome

Background: Up to 30% of all pregnant women drink alcohol. The intrauterine alcohol exposure can lead to fetal alcohol syndrome (FAS). FAS has an estimated prevalence of 8 per 1,000 births. Until now, many professional groups are not informed sufficiently about this syndrome and only a fraction of the affected children are diagnosed early in the lifetime. The toxically determined impairments of functions and everyday life can be influenced positively by early and individual support of the patients.

Methods: FAS can be diagnosed by means of the German S3 guideline. This guideline is based on evidence-assessed literature and was developed together with the relevant professional societies, the patient support group FASD Germany and other FAS experts. For implementation of the guideline content, different paths were trodden to inform as many professional groups as possible about FAS.

Results: The guideline can be downloaded for free from http://www.awmf.org/leitlinien/detail/ll/022-025.html.

For a quick practical orientation, the guideline recommendations were summarized in an algorithm and a pocket guide was developed. For each diagnostic column (growth deficiencies, facial anomalies, and abnormalities of the central nervous system), differential diagnosis of FAS were integrated in the pocket guide. In addition, possible risk factors for maternal alcohol use and for the development of FAS are described. A guideline book FAS (Series Pediatric Neurology, Kohlhammer Verlag, Stuttgart, Germany) was composed and distributed in a high quantity free of charge to the participating professional societies for further dissemination, to the patient support group, to the FAS experts, to all practicing neuropediatricians, to all centers for pediatric and developmental neurology and to all youth welfare offices in Germany. The guideline was discussed at international congresses and was published internationally.

Conclusion: With the previous steps of implementation, many relevant professional helpers of the health and social system could be reached and informed about FAS. The resonance of the professionals and patients was highly positive. A German App for the diagnosis of FAS will be finalized in short time. Many further steps are necessary to intensify the education about FAS and therefore to provide a basis for concrete support for affected persons.