Twenty years of patient surveys confirm a FASD 4-digit-code interdisciplinary diagnosis afforded substantial access to interventions that met patients' needs

摘要

Background 2013 marks the 40th year since the term fetal alcohol syndrome (FAS) was coined at the University of Washington. In 1993, the University of Washington opened the first interdisciplinary FASD diagnostic clinic; expanded to a statewide network of clinics in 1995 (Washington State FAS Diagnostic & Prevention Network (WA FASDPN)), and introduced a new, rigorous diagnostic system, the fetal alcohol spectrum disorder (FASD) 4-Digit Diagnostic Code in 1997. The WA FASDPN mission is FASD primary and secondary prevention. Evidence of successful primary prevention (fewer alcohol-exposed pregnancies and FAS births) was documented in WA in the 1990s. Secondary prevention (reduction of disability among individuals with prenatal alcohol exposure) starts with accurate diagnoses and access to interventions that meet patients' needs. Objective Do patients report an FASD diagnostic evaluation affords them access to interventions that meet their needs? Methods Twenty years of follow-up surveys from 622 patients (birth through adult) who received an interdisciplinary FASD diagnostic evaluation at the University of Washington FASDPN using the 4-Digit Code were reviewed. Results Patients (99%) expressed high satisfaction in the FASD diagnostic process and outcome. Patients reported success accessing (89%) recommended interventions that met their needs (96%). Patients with Neurobehavioral-Disorder/Alcohol-Exposed and Static-Encephalopathy/Alcohol-Exposed were as successful accessing interventions that met their needs as patients with FAS/Partial-FAS. Families of patients 0-5 years old reported the greatest access and needs met. Conclusions Patient surveys confirm an interdisciplinary diagnosis using the 4-Digit Code affords them substantial access to interventions that meet their needs across the spectrum of FASD diagnoses.