Twenty Years of Patient Surveys Confirm a FASD 4-Digit-Code Interdisciplinary Diagnosis Afforded Substantial Access to Interventions That Met Patients' Needs

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Susan J Astley


Fetal alcohol spectrum disorder (FASD), Fetal alcohol syndrome (FAS), FASD 4 - Digit Diagnostic Code, Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network (WA FASDPN) Intervention



2013 marks the 40 th year since the term fetal alcohol syndrome (FAS) was coined at the University of Washington. In 1993, the University of Washington opened the firs t 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 mee t their needs?


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.


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 .


Patient surveys confirm an interdisciplinary diag nosis using the 4 - Digit Code affords them substantial access to interventions that meet their needs across the spectrum of FASD diagnoses.

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1. Smith DW. The fetal alcohol syndrome Hosp Pract 1979;14(10):121 - 128.
2. Astley S. Diagnosing Fetal Alcohol Spectrum Disorders (FASD). In: Adubato S CD, ed. Diagnosis, Assessment and New Directions in Research and Multimodal Treatment: Bentham Sc ience Publishers Ltd; 2011:3 - 29.
3. Astley SJ. Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4 - Digit Diagnostic Code. 3rd ed. Seattle: University of Washington Publication Services; 2004.
4. Abel E, Sokol R. Incidence of fetal alcohol syndrome and economic impact of FAS - related anomalies. Drug Alcohol Depend 1987;19(1):51 - 70.
5. Stratton K, Howe C, Battaglia F. Fetal Alcohol Syndrome: Diagnosis Epidemiology Prevention and Treatment. Institute of Medicine. Washington DC National Academy Press; 1996.
6. As tley S, Stachowiak J, Clarren S, Clausen C. Application of the fetal alcohol syndrome facial photographic screening tool in a foster care population. J Pediatr 2002;141(5):712 - 717.
7. Astley S. Fetal alcohol syndrome prevention in Washingon State: Evidence of success. Paediatr Perinat Epidemiol 2004;18:344 - 351.
8. Astley S. 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. Canadia n Journal of Clinical Pharmacology 2010;17(1):e132 - e164.
9. Jones K, Smith D, Ulleland C, Streissguth A. Pattern of malformation in offspring of chronic alcoholic mothers. Lancet 1973;1:1267 - 1271.
10. Astley S. Validation of the fetal alcohol spectrum disorder (FASD) 4 - Digit Diagnostic Code. Journal of Population Therapeutics and Clinical Pharmacology 2013;20(3):e416 - e467.
11. Astley S, Bailey D, Talbot T, Clarren S. Fetal alcohol syndrome (FAS) primary prevention through FAS diagnosis: II. A comprehensive profile of 80 birth mothers of children with FAS. Alcohol Alcohol 2000;35(5):509 - 519.
12. Astley S, Bailey D, Talbot T, Clarren S. Fetal alcohol syndrome (FAS) primary prevention through FAS diagnosis: I. Identification of high - risk birth mothers through the diagnosis of their children. Alcohol Alcohol 2000;35(5):499 - 508.
13. Lipscomb L, Johnson C, Morrow B, Gilbert B, Ahluwalia I, Beck L. PRAMS Surveillance Report 1998. In: Health DoR, ed. Atlanta: CDC; 2000.
14. Mosby. Mosby's Medical Dictionary. 8th ed: Elsevier Science; 20 08.
15. Astley S. Interdisciplinary Approach to FASD Diagnosis using the FASD 4 - Digit Diagnostic Code: Training Programs. [website]. 2009; g.htm . Accessed 8/1/2009.
16. Astley S. FASD 4 - Digit Code Online Course. Univ ersity of Washington; 2004.
17. Jirikowic T, Gelo J, Astley S. Children and youth with fetal alcohol spectrum disorders: Summary of intervention recommendations after clinical diagnosis. Intellectual and Developmental Disabilities 2010;48(5):330 - 344.
18. Olson HC, Jirikowic T, Kartin D, Astley SJ. Responding to the challenge of early intervention for fetal alcohol spectrum disorders. Infants and Young Children 2007;20:172 - 189.
19. Olson H, Brooks A, Davis C, Astley S. Creating and testing a new model of behavioral consultation for families raising school - aged children with FAS/ARND and behavioral problems. Alcohol Clin Exp Res 2004;28(suppl 5):718.
20. Bertrand J, Floyd RL, Weber MK, et al. National Task Force on FAS/FAE Fetal Alcohol Syndrome: Guidelines for Referral and D iagnosis: Atlanta GA: Centers for Disease Control and Prevention 2004.
21. Clarren S, Astley S. Development of the FAS Diagnostic and Prevention Network in Washington State. Seattle: University of Washington Press; 1997.
22. Clarren S, Olson H, Clarren S, Astley S . A child with fetal alcohol syndrome. Baltimore: Paul H. Brookes Publishing Co; 2000.
23. FAS Facial Photographic Analysis Software [ computer program ]. Version 2.0. Seattle: University of Washington; 2012.
24. Sokol R, Clarren S. Guidelines for use of terminology describing the impact of prenatal alcohol on the offspring. Alcohol Clin Exp Res 1989;13:597 - 598.
25. Astley SJ, Clarren SK. Diagnosing the full spectrum of fetal alcohol exposed individuals: Introducing the 4 - Digit Diagnostic Code. Alcohol Alcohol 2000;35:400 - 410.
26. Astley SJ, Clarren SK. Diagnostic Guide to FAS and Related Conditions: The 4 - Digit Diagnostic Code 1st ed. Seattle: University of Washington Publication Services; 1997.
27. Aase JM, Jones KL, Clarren SK. Do we need the term “FAE”? Pediatrics 1995;95:428 - 430.
28. Astley S, Clarren S. A fetal alcohol syndrome screening tool. Alcohol Clin Exp Res 1995;19(6):1565 - 1571.
29. Astley S, Clarren S, Little R, Sampson PD, Daling J. Analysis of facial shape in children gestationally exposed to marijuana, alcohol, and/or cocaine. Pediatrics 1992;89:67 - 77.
30. Astley S, Magnuson S, Omnell L, Clarren S. Fetal alcohol syndrome: Changes in craniofacial form with age, cognition, and timing of ethanol expos ure in the Macaque. Teratology 1999;59:163 - 172.
31. Astley SJ, Clarren SK. A case definition and photographic screening tool for the facial phenotype of fetal alcohol syndrome. J Pediatr 1996;129:33 - 41.
32. Astley SJ, Clarren SK. Measuring the facial phenotype of individuals with prenatal alcohol exposure: correlations with brain dysfunction. Alcohol Alcohol 2001;36:147 - 159. 33. Bertrand J. Interventions for children with fetal alcohol spectrum disorders (FASDs): Overview of findings for five innovative research projec ts. Res Dev Disabil 2009.
34. Peadon E, Rhys - Jones B, Bower C, Elliot J. Systematic review of interventions for children with fetal alcohol spectrum disorders. BMC Pediatrics 2009;9:35.
35. Ryan D, Bonnett DM , Gass CB. Sobering thoughts: Town hall meetings on fetal alcohol spectrum disorders. Am J Public Health 2006;96:2098 - 2101. 1698155/
36. Ryan D, Ferguson D. On, yet, under the radar: Students with fetal alcohol syndrome. Ex cept Child 2006;72(363 - 380):363.
37. Olson H, Oti R, Gelo J, Beck S. Family matters: Fetal alcohol spectrum disorders and the family. Developmental Disabilities Research Reviews 2009;15:235 - 239.
38. Petrenko C, Tahir N, Mahoney E, Chin N. Prevention of secondary c onditions in fetal alcohol spectrum disorders: Identification of systems - level barriers. Maternal and Child Health Journal 2013:e1 - e10.
39. Astley SJ, Olson HC, Kerns K, et al. Neuropsychological and behavioral outcomes from a comprehensive magnetic resonance study of children with fetal alcohol spectrum disorders. Canadian Journal of Clinical Pharmacology 2009;16(1):e178 - e201.