Office of Fetal Alcohol Syndrome

The 4-Digit Diagnostic Code is a tool developed by Drs. Susan Astley and Sterling Clarren at the University of Washington FAS Diagnostic and Prevention Network to assist in conducting a full, comprehensive diagnosis for individuals affected by prenatal exposure to alcohol. This method of diagnosis was selected for use by the Alaska FAS Diagnostic Team Network in 1998, after reviewing an enormous amount of data about diagnosing FAS and other alcohol-related birth defects.

   Having a process that would provide an accurate, reproducible and unbiased method for measuring and recording the severity of exposure and outcomes in individual clients was critical as we began the process of establishing a number of diagnostic clinics across Alaska. In order to establish a statewide process, with consistency in diagnosis from community to community, this type of standardized diagnostic process was essential. We want to ensure that a diagnosis made in Kotzebue is the same as a diagnosis made in Ketchikan, providing comparable data for improved understanding about the extent and severity of FASD across Alaska. The four “digits” in the code refer to the four key diagnostic elements of FAS:

1) growth deficiency;
2) the FAS facial features or “FAS phenotype”;
3) central nervous system (brain) damage/dysfunction; and
4) maternal drinking during pregnancy.

   The severity of each feature is then ranked independently (through a variety of exams, measurements and tests) on a 4-point scale with a 1 reflecting absence of the element, and 4 reflecting a strong or “classic” presence of the diagnostic element. In the example below, the 4-Digit Code is a 3444, which results in a diagnosis of fetal alcohol syndrome (medically termed “static encephalopathy, alcohol exposed). Once the patient receives a 4 digit code (of which 256 possible codes exist!) the number then relates to one of 22 possible diagnostic categories that include all of the possible outcomes that prenatal alcohol exposure presents. From this code, diagnostic teams can identify both cases where individuals meet the full diagnosis of FAS as well as cases where individuals have brain damage and documented prenatal exposure to alcohol, but do not have the growth deficiency or any of the associated facial features.

   Team members typically needed to conduct a full 4-Digit Diagnosis include a physician, a psychologist, an occupational or physical therapist, a speechlanguage pathologist, and a parent navigator/family advocate. Having such a diverse group of professionals allows for a full understanding of the cognitive deficits, physical abnormalities, as well as the client and family needs. The use of this diagnostic approach has many benefits including increased precision and accuracy through the use of objective, quantitative measurements and specific case definitions, and better characterization of the full spectrum of alcohol-related disabilities (not just FAS).

   Each of the 13 teams that represent the Alaska FAS Diagnostic Team Network has received training at the University of Washington in using and understanding the 4-Digit Diagnostic Code. To increase our long-term diagnostic sustainability in Alaska, the Office of FAS is funding the development of an instate training center that will be capable of preparing individuals to use this diagnostic method without having to travel out-of-state and to serve as a resource for ongoing development of diagnostic capacity across Alaska. Training center development will begin in July of 2003. For more information about this diagnostic process you can contact the DHSS Office of FAS, your local FAS Diagnostic Team (a complete listing of Alaska’s diagnostic teams is included on the previous page) or the University of Washington’s FAS Diagnostic and Prevention Network website at www.depts.washington.edu/fasdpn/.

Posted Spring 2003