National Drug Strategy
National Drug Strategy

Intergovernmental committee on Drugs working party on Fetal Alcohol Spectrum Disorders

Monograph

Fetal Alcohol Spectrum Disorders in Australia: An Update

June 2012

9.2 Implications for development of diagnostic and assessment services in Australia

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The study by Peadon et al. confirms that diagnostic and assessment services for children exposed to alcohol in pregnancy or with FASD are concentrated in North America and that clinical services outside North America are mostly dependent on research funding from the USA (Peadon et al. 2008). Countries such as Australia, in planning diagnostic services, should aim to develop multidisciplinary teams of specialists trained in the screening, diagnosis and management of FASD. Ideally, an interdisciplinary approach, such as that used recently for the Lililwan study in remote Western Australia should be taken (Latimer et al. 2010; Fitzpatrick et al. 2012). This requires that the multidisciplinary team comes together to assess the child, to ‘case conference’, and to jointly assign a diagnosis and develop a management plan and a strategy for feedback to parents, teachers and other health professionals. However, models for service provision need to be adapted to the population distribution and needs. For example, it may be most appropriate to train core teams of professionals working in the area of child development in each Australian State and Territory in the diagnosis and assessment of children exposed to alcohol in pregnancy. Alternatively, specialized clinics could be set up in one or more states to provide a national referral service. A mobile team, visiting intermittently, may be appropriate in remote settings. In Indigenous communities the assessments may need to be adapted to account for language and cultural needs of the population. For rural and remote settings telemedicine could be used by specialised clinicians to complement local expertise (Elliott et al. 2012; Fitzpatrick et al. 2012).

Professionals working in the clinics identified in Peadon’s study used a variety of diagnostic criteria, including those proposed by the University of Washington, the Centres for Disease Control, the Institute of Medicine and Hoyme (Peadon et al. 2008). Clinics frequently used two different sets of criteria in combination or used modifications of published criteria (Peadon et al. 2008). It will be important to establish agreement about the most appropriate diagnostic criteria for use in Australia because this would enable standardization and comparison of data collected by clinical services and researchers and would be particularly important for intervention trials. Currently, the FASD Collaboration**** is funded by the Australian Government Department of Health and Ageing to review the medical literature and to seek input from clinicians nationally regarding their preference for diagnostic criteria for use in Australia and the justification for a screening program. The diagnostic method must also be evidenced-based, sensitive and specific, and account for other exposures during pregnancy and early life events (Astley and Clarren 2001).

Mutch and colleagues suggest that the University of Washington FASD 4-digit diagnostic code (Astley 2006) fulfils these best practice criteria and recommend it as the method of choice for Australia (Mutch et al. 2009). The FASD Collaboration concluded that elements of both the University of Washington and Canadian criteria were the best fit for clinical practice in Australia. A uniform diagnostic capacity, agreed and applicable across Australia, would assist in identifying opportunities for intervention, prevention and treatment for FAS.

Table 9.1 Clinic characteristics (adapted from reference 8)

Clinic SiteFunding SourceServices OfferedReferral Criteria
Canada
Province A6State, fee for serviceDiagnostic, short term managementNone
Province B7State, research, communityDiagnostic, short term managementChildren with verified prenatal
exposure to alcohol selected from the
waiting list for the psychology clinic
Province CFederal, charitableScreening, diagnosis, managementChildren of women in a drug
treatment programme only
Province C 9Federal funding now ceased; clinic not operationalDiagnostic, short term managementNone
Province CStateScreening, diagnosis, managementPrenatal alcohol exposure and
evidence of CNS (behaviour)
USA
State AaFederalDiagnosis, short term managementPrenatal alcohol exposure
State BSelf-pay, insuranceDiagnosisNone
State BbInsurance, research grantsScreening, diagnosis, managementNone
State BFee for serviceDiagnosisNone
State BStateScreening, diagnosis, managementPrenatal alcohol exposure and
contacted telephone information
service
State CState and federal funding, fee for service, insuranceScreening, diagnosis, managementPrenatal exposure to alcohol or other
Drugs
State DResearch grantsScreening, diagnosisChildren of heavy drinkers
State EFee for service, charitable foundationDiagnosisFASD highly suspected, but may not
be confirmed
State FState and federalScreening, diagnosisNone
State GcFederalScreening, diagnosisDevelopmental delay, growth
parameters less than 25th centile,
known prenatal alcohol exposure, or
previous diagnosis of FAS/FASD
State HState and federal funding, fee for serviceScreening, diagnosis, managementNone
State ISliding fee scale, adoption subsidy, children services, contributionsScreening, diagnosis, managementPrenatal alcohol exposure suspected
and referrals screened for suitability
State JStateScreening, diagnosisAny prenatal alcohol exposure
State KContract, federal, state, fee for serviceScreening, diagnosis, short term managementPrenatal alcohol exposure,
developmental and/or behavioural
concerns
Chile
Clinic AResearch grants (US NIH)Screening, diagnosis, managementProtocol (unspecified)
South Africa
Clinic AResearch (US and local)Screening, diagnosis, managementBirth records from local hospitals
Clinic BcFederal (US research)Screening, diagnosis, managementDevelopmental delay, growth
parameters less than 25th centile,
known prenatal alcohol exposure, or
previous diagnosis of FAS/FASD
Italy
Clinic AcFederal (US research)Screening, diagnosisDevelopmental delay, growth
parameters less than 25th centile,
known prenatal alcohol exposure, or
previous diagnosis of FAS/FASD
UK
Clinic ANational Health ServiceDiagnosisnone



a Aggregate data for network of 11 clinics
b These clinics also have research focussed satellite clinics; however, insufficient separate information was given for separate inclusion
c Clinics are a linked research network

**** The Australia FASD Collaboration members are: Carol Bower1, Elizabeth J Elliot2,3, Raewyn C Mutch1,4, Janet M Payne1, Jane Latimer5, Elizabeth Russell6, James Fitzpatrick2, Lorian Hayes7, Lucinda Burns8, Jane Halliday9, Heather D’Antoine10, Amanda Wilkins1,4, Elizabeth Peadon2,3, Sue Miers11, Maureen Carter12, Colleen O’Leary1,13, Anne McKenzie1, Rochelle E Watkins1, Heather M Jones1.
1 Telethon Institute of Child Research, Centre for Child Health Research, University of Western Australia, Perth
2 Discipline of Paediatrics and Child Health, University of Sydney, Sydney
3 The Children’s Hospital at Westmead, Sydney
4 Child and Adolescent health Service, Department of Health Western Australia, Perth
5 The George Institute for Global Health, Sydney
6 Russell Family Fetal Alcohol Disorders Association, Cairns
7 Centre for Chronic Disease, School of Medicine, University of Queensland, Brisbane
8 National Drug and Alcohol Research Centre, University of New South Wales, Sydney
9 Public Health Genetics, Laboratory and Community genetics, Murdoch Children’s Research Institute
10Menzies School of Health Research, Darwin
11 National Organisation for Fetal Alcohol Syndrome and Related Disorders, Adelaide
12 Nindilingarri Cultural Health Service, Fitzroy Crossing
13 National Drug Research Institute, Curtin University, Perth

Case study: The University of Washington Fetal Alcohol Diagnostic and Preventive Network: a model of care for Australia?

The FASD Diagnostic and Preventive Network, based at the Centre on Human Development and Disability in the University of Washington, has developed a model for diagnosing, treating and preventing FASD (Astley and Clarren 1995; Astley et al. 1995; Astley et al. 1999; Astley et al. 2000; Astley and Clarren 2000; Astley and Clarren 2001; Astley et al. 2002; Astley 2004; Astley 2006). The fulcrum to the University of Washington FASD Diagnostic and Preventative Network is the FASD 4- Digit-Diagnostic Code, an evidence-based, specific and sensitive diagnostic tool. The University of Washington’s FASD 4-Digit-Diagnostic code allows clinicians to assign a code to a broad range of clinical domains that are assessed using a interdisciplinary approach and also to report the severity of abnormalities. In 2008 the University of Washington’s interdisciplinary team included a clinic coordinator, paediatrician, speech and language pathologist, occupational therapist, paediatric clinical psychologist, social worker, family advocate and research staff. The detail afforded by the UW interdisciplinary assessment is efficiently completed during one outpatient visit. The FASD 4-Digit-Code ensures the individual phenotype is understood, the child’s strengths and weaknesses are identified and that a therapeutic plan is tailored to meet the measured needs of each child.

The 4-Digits of the University of Washington Code denote four principal domains examined during diagnostic assessment: growth, facial appearance; central nervous system structure and function; and history of alcohol exposure. The code considers two additional domains: prenatal and postnatal exposures to other teratogenic and harmful substances; and consideration of early life environmental, psychological and physical events. The specificity and sensitivity afforded by the categorical outcomes of the FASD 4-Digit-Diagnostic code allows for exclusion of and research into other factors, such as genetic and metabolic phenomena, that may protect against, promote or mimic a phenotype resembling FASD.

On-line training in the FASD 4-Digit-Diagnostic code is available through the University of Washington website (see FAS Diagnostic and Prevention Network website ). The on-line course is clearly structured for easy learning and amenable to busy professionals completing the brief modules when convenient. The University of Washington diagnostic method is evidence based and the diagnostic terms describe measured clinical findings. The University of Washington method does not employ labels such as alcohol-related and therefore may reduce clinicians’ concerns and reticence to diagnose FASD for fear of stigmatising their clients (Payne et al. 2005).
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