Diagnosing the full spectrum of fetal alcohol-exposed individuals: introducing the 4-digit diagnostic code.

The medical/research records of 1014 patients diagnosed at the Washington State Fetal Alcohol Syndrome (FAS) Diagnostic and Prevention Network (DPN) of clinics were used to develop a new, comprehensive, reproducible method for diagnosing the full spectrum of outcomes among patients with prenatal alcohol exposure. This new diagnostic method, called the 4-Digit Diagnostic Code, was compared to the standard gestalt method of diagnosis on the first 454 patients who had received a gestalt diagnosis of FAS, atypical FAS (AFAS) or possible fetal alcohol effect (PFAE) prior to the development of the 4-Digit Diagnostic Code. The outcomes of the patients were more accurately and comprehensively documented by the 4-Digit Diagnostic Code, because of its use of quantitative, objective measurement scales and specific case definitions. The four digits in the code reflect the magnitude of expression of the four key diagnostic features of FAS in the following order: (1) growth deficiency; (2) the FAS facial phenotype; (3) central nervous system damage/dysfunction; (4) gestational alcohol exposure. The magnitude of expression of each feature is ranked independently on a four-point Likert scale with 1 reflecting complete absence of the FAS feature and 4 reflecting a strong 'classic' presence of the FAS feature. The 4-Digit Diagnostic Code is being used effectively for diagnosis, screening, and surveillance efforts in all Washington State FAS DPN clinics.

[1]  J. Aase.  Clinical Recognition of FAS: Difficulties of Detection and Diagnosis. , 1994 .

[2]  M Puig,et al.  Fetal alcohol syndrome , 1979 .

[3]  J. Ager,et al.  Neonatal diagnosis of fetal alcohol syndrome: not necessarily a hopeless prognosis. , 1995, Alcoholism, clinical and experimental research.

[4]  S. Cummings,et al.  Designing Clinical Research: An Epidemiologic Approach , 1988 .

[5]  H. Nitowsky.  Fetal alcohol syndrome and alcohol-related birth defects. , 1982, New York state journal of medicine.

[6]  S. Clarren.  Recognition of fetal alcohol syndrome. , 1981, JAMA.

[7]  Leszek Wojnar,et al.  Image Analysis , 1998 .

[8]  A. Streissguth,et al.  The challenge of Fetal Alcohol Syndrome: Overcoming secondary disabilities. , 1997 .

[9]  David W. Smith,et al.  Recognition of the fetal alcohol syndrome in early infancy. , 1973, Lancet.

[10]  J. Allanson,et al.  Handbook of Normal Physical Measurements , 1989 .

[11]  C. Goodlett,et al.  Alcohol and brain development. , 1987, NIDA research monograph.

[12]  H. Rosett.  A clinical perspective of the Fetal Alcohol Syndrome. , 1980, Alcoholism, clinical and experimental research.

[13]  R. Sokol,et al.  Guidelines for use of terminology describing the impact of prenatal alcohol on the offspring. , 1989, Alcoholism, clinical and experimental research.

[14]  S. Clarren,et al.  A case definition and photographic screening tool for the facial phenotype of fetal alcohol syndrome. , 1996, The Journal of pediatrics.

[15]  J. Cordero,et al.  Leading major congenital malformations among minority groups in the United States, 1981-1986. , 1988, MMWR. CDC surveillance summaries : Morbidity and mortality weekly report. CDC surveillance summaries.

[16]  Denise Polit-O'Hara,et al.  Nursing Research: Principles and Methods , 1978 .

[17]  E. K. Turner,et al.  FETAL ALCOHOL SYNDROME , 1978, Paediatrics & child health.

[18]  Use of International Classification of Diseases Coding to Identify Fetal Alcohol Syndrome—Indian Health Service Facilities, 1981–1992 , 1995, MMWR. Morbidity and mortality weekly report.

[19]  Susan J. Astley,et al.  Diagnostic Guide for Fetal Alcohol Syndrome and Related Conditions: The 4 - Digit Diagnostic Code , 1997 .

[20]  K. Jones,et al.  Do we need the term "FAE"? , 1995, Pediatrics.

[21]  M. L. Martin,et al.  Tracking the Prevalence of FAS , 1994, Alcohol health and research world.