Profile of the first 1,400 patients receiving diagnostic evaluations for fetal alcohol spectrum disorder at the Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network

Abstract

Background: An interdisciplinary approach to fetal alcohol spectrum disorder (FASD) diagnosis using rigorously defined diagnostic guidelines has been adopted as best practice. Diagnostic clinics are being established worldwide. If these clinics are to successfully compete for limited health care dollars, it is essential to document their value.

Objective: The primary objectives were to document the value of the largest and longest standing interdisciplinary FASD diagnostic program; the Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network (WA FAS DPN). Now in its 17th year of operation, the WA FAS DPN is a statewide network of diagnostic clinics all using the 4-Digit Diagnostic Code and contributing to a centralized electronic database.

Methods: The clinical database was used to generate comprehensive profiles of all patients evaluated for FASD from 1993-2005. These profiles were used to answer a multitude of clinical, research, and public health questions including: What is the demand for FASD diagnostic services, who is referred to the clinics, and what are their FASD diagnostic outcomes? Can FAS/D prevalence estimates from this clinical population be used to estimate FAS/D prevalence estimates in the general population? Do FASD diagnostic outcomes vary by race, age or alcohol exposure? Does the presence of other adverse exposures/events lead to more severe outcomes? Does this approach to diagnosis meet the needs of families?

Results: Demand for diagnosis remains very high. Of 1,400 patients (newborn to adult) with confirmed prenatal alcohol exposure, 11% were diagnosed with FAS/PFAS, 28% with static encephalopathy, 52% with neurobehavioral disorder, and 9% with no evidence of CNS abnormality. FASD outcomes varied significantly by age, race, gender, alcohol exposure, and presence of other risk factors. Families reported high satisfaction with the diagnostic process, and receipt of information/services they were unable to obtain elsewhere.

Conclusions: This report documents the immense contribution of a statewide FASD diagnostic program, and underscores the extraordinary value of a comprehensive FASD clinical dataset.