Fetal Alcohol Spectrum Disorder (FASD) is caused by prenatal alcohol exposure and is characterised by severe neurodevelopmental impairment, that may include intellectual disability, behavioural and other developmental problems.1,2 FASD causes a significant burden to individuals, the health care, education, and justice systems and society.1,2
What is the gap and why is it important?
In Australia, the diagnosis of FASD is divided into two sub-categories: FASD with three sentinel facial features (replacing the diagnosis of Fetal Alcohol Syndrome [FAS]); and FASD with less than three facial features.3 Indigenous Australian women, although less likely to drink alcohol during pregnancy, drink at riskier levels than non-Indigenous women.4 Research showed FAS prevalence in Indigenous Australian children born in the Top End of the Northern Territory between 1990 and 2000 to range between 1.87 and 4.7 per thousand live births, significantly higher than rates in non-Indigenous children.5 In 2010, a survey of 7 to 8 year old children in the Fitzroy Valley, Western Australia (WA), showed 19% had FASD, which is among the highest rate observed worldwide.6 Many of these children had learning and behaviour difficulties which warrant early intervention.7 In a juvenile justice setting in WA, 36% of children/adolescents assessed had a diagnosis of FASD, of whom 74% were Indigenous.8 Early diagnosis enables early intervention, which decreases the risk of adverse adolescent/adult outcomes including disrupted schooling, trouble with the law, incarceration, repeated inappropriate sexual behaviours, social disorders, and alcohol/drug problems by 2–4 fold.9,10 Interventions focused on self-regulation and attentional control can improve outcomes.11 Primary healthcare providers are positioned to enable early diagnosis and management of FASD.6 However, gaps in health professionals’ knowledge, skills and confidence and their attitudes; as well as the lack of local diagnostic guidelines prevent optimal management of FASD. In 2007, only 16% of health professionals in WA could identify the essential diagnostic criteria for FAS.12 In the past, the adoption of international FASD diagnostic guidelines by health professionals in Australia has been hampered by perceptions of limited applicability to the Australian population; the poor evidence base for treatment and prevention of FASD;13 and the lack of interdisciplinary and interagency models to support service delivery in Australia.14 Health professional and service shortages compound this problem for families in rural and remote areas.15,16
What does the best available evidence tell us?
Early recognition and treatment of FASD (before the age of 6 years) improves health outcomes.9,10,11 To diagnose FASD, a multidisciplinary team of health professionals including paediatricians, psychologists, occupational therapists, physiotherapists, and speech therapists is optimal.3 Early diagnosis will reduce risks of adverse outcomes in adolescence and adulthood through provision of family support services, specialised schools, programs and interventions; improved preparation of families when the affected child transitions into young adulthood; effective treatment of the mother if necessary; and family access to appropriate supports and benefits.9,10,17
Guidelines that provide clear diagnostic criteria, assessment methods, and provide guidance for developing management plans, and include an implementation tool are more likely to be adhered to.18,19 Guidelines are more likely to be adopted by health professionals if they are developed in consultation with health professionals and are locally relevant. This requires consideration of the cultural context and available services and input from Indigenous Australian peoples.20,21
When implementing practice change in Indigenous Australian communities, community consultation is essential to avoid imposing a “one size fits all” solution, which may be exclusionary and detrimental to the communities.20 Implementation should involve partnerships between health professionals, Indigenous Australian community groups, and where applicable, Government.21
What is current practice or policy?
Education alone contributes minimally to increased diagnosis and reporting17,18 with small increases in the number of health professionals who; knew the features of FAS (from 12% to 16%); had diagnosed FAS (from 5% to 7%) and had referred children to confirm a FAS diagnosis (13% to 18%).12,22 Despite education, 47% of health professionals feel unprepared to deal with FAS; with only 3% being “very prepared”.22 Only 22% of paediatricians routinely asked pregnant women about prenatal alcohol exposure and only 18% knew the FAS diagnostic features.22
The evidence-based Australian Guide to the Diagnosis of FASD (2016) was developed with input from Indigenous Australians, to provide a standardised approach to FASD diagnosis which was consistent with international guidelines.3 Since 2016, the Australian Guide to the Diagnosis of FASD has been widely disseminated and training in its use has been provided nationally. The Australian Guide is the most frequently accessed page on the FASD Hub Australia website. The Australian Guide to the Diagnosis of FASD is currently undergoing review. Formative evaluation needs to be done to determine the most effective and acceptable framework for active dissemination and use by each health professional group;24,25 and routine evaluation of its efficacy will be required.19
Indigenous Australian families in rural/remote areas have limited access to health professionals with experience or training in the use of the Australian Guide to the Diagnosis of FASD,3 let alone access to multidisciplinary teams.15,16 In these communities, most children use the Aboriginal Medical Services and Aboriginal Health workers are often the first contact.16 Also, children in remote/very remote areas with an Indigenous Australian carer are less likely to see a doctor.16 This contributes to additional barriers to early detection and treatment of FASD.
In 2017, the Australian Government allocated funding to FASD prevention, education, and referral programs in Northern Territory and New South Wales; and to develop capacity for FASD diagnostic services in Western Australia, Northern Territory, South Australia, Tasmania, Victory, and Queensland. In 2018, they funded further dissemination and evaluation of the Australian Guide to the Diagnosis of FASD and e-Learning Modules. This was followed in late 2018 with a new national action plan and $7 million in new funding which includes review of the Australian Guide to the Diagnosis of FASD.
What would the impact be if the proposed action was implemented?
We propose that health professionals are provided with access to the Australian Guide to the Diagnosis of FASD and training in its use for assessment of children. This would result in:
- Earlier diagnosis of FASD
- Increased FASD diagnosis
- Standardisation of diagnosis of FASD
- Opportunity for early optimal management to minimise secondary adverse outcomes
- Increased opportunity for FASD prevention in subsequent pregnancies
- Acquisition of more accurate prevalence and outcome data on FASD to inform future services and interventions.
Remaining challenges include:
- Formative evaluation to identify the extent of dissemination of the Australian Guide to the Diagnosis of FASD, and methods to maximise uptake of the training by health professionals.
- National dissemination of the Guide and effective training of health professionals who may be involved in the FASD diagnostic process to build capacity nationally.
- Equitable access for Indigenous Australians to resources and services including:
- Multidisciplinary assessment for FASD, especially in rural and remote Indigenous Australian communities
- Improving the evidence-base for treatment of people with FASD
- Support, education and parenting training for families living with FASD
- Access to Government support (e.g., National Disability Scheme, carer’s allowance)
- Lange S, Probst C, Gmel G, Rehm J, Burd L, Popova S. Global prevalence of fetal alcohol spectrum disorder among children and youth: A systematic review and meta-analysis. JAMA Pediatrics 2017: doi:10.1001/jamapediatrics.2017.1919.
- Tsang TW, Lucas BR, Carmichael Olson H, Pinto RZ, Elliott EJ. Prenatal alcohol exposure, FASD, and child behavior: a meta-analysis. Pediatrics 2016; 137(3): e20152542.
- Bower C, Elliott EJ, on behalf of the Steering Group. Report to the Australian Government Department of Health: "Australian Guide to the diagnosis of Fetal Alcohol Spectrum Disorder (FASD)". Australia: Australian Government Department of Health; 2016.
- Australia. Parliament. House of Representatives. Standing Committee on Indigenous Affairs. Alcohol, hurting people and harming communities: inquiry into the harmful use of alcohol in Aboriginal and Torres Strait Islander communities / House of Representatives, Standing Committee on Indigenous Affairs. Canberra: Standing Committee on Indigenous Affairs; 2015.
- Harris KR, Bucens IK. Prevalence of fetal alcohol syndrome in the Top End of the Northern Territory. Journal of Paediatrics and Child Health 2003; 39(7):528-533.
- Fitzpatrick JP, Latimer J, Carmichael Olson H, et al. Prevalence and profile of neurodevelopment and fetal alcohol spectrum disorder (FASD) amongst Australian Aboriginal children living in remote communities. Research in Developmental Disabilities 2017; 65(2017): 114-26.
- Tsang TW, Carmichael Olson H, Latimer J, et al. Behavior in children with FASD in remote Australia: A population-based study. Journal of Developmental and Behavioral Pediatrics 2017: doi:10.1097/DBP.0000000000000463.
- Bower C, Watkins RE, Mutch RC, et al Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia BMJ Open 2018;8:e019605. doi: 10.1136/bmjopen-2017-019605.
- Streissguth AP, Bookstein FL, Barr HM, Sampson PD, O'Malley K, Young JK. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental & Behavioral Pediatrics 2004; 25(4): 228-38.
- Alex K, Feldmann R. Children and adolescents with fetal alcohol syndrome (FAS): better social and emotional integration after early diagnosis. Klin Padiatr 2012; 224(2): 66-71.
- Reid N, Dawe S, Shelton D, et al. Systematic review of fetal alcohol spectrum disorder interventions across the life span. Alcohol Clin Exp Res 2015: doi: 10.1111/acer.12903.
- Payne J, France K, Henley N, et al. Changes in health professionals' knowledge, attitudes and practice following provision of educational resources about prevention of prenatal alcohol exposure and fetal alcohol spectrum disorder. Paediatr Perinat Epidemiol 2011; 25(4): 316-27.
- Elliott E. Health of Indigenous peoples: fetal alcohol spectrum disorders (FASD). Cochrane Library 2015.
- Watkins RE, Elliott EJ, Mutch RC, et al. Health professionals' perceptions about the adoption of existing guidelines for the diagnosis of fetal alcohol spectrum disorders in Australia. BMC Pediatrics 2012; 12: 69.
- Dossetor, P.J., Thorburn, K., Oscar, J. et al. Review of Aboriginal child health services in remote Western Australia identifies challenges and informs solutions. BMC Health Serv Res 19, 758 (2019). https://doi.org/10.1186/s12913-019-4605-0.
- Zubrick SR, Lawrence DM, Silburn SR, et al. The Western Australian Aboriginal Child Health Survey: The health of Aboriginal children and young people. Perth: Telethon Institute for Child Health Research; 2004.
- Benz J, Rasmussen C, Andrew G. Diagnosing fetal alcohol spectrum disorder: History, challenges and future directions. Paediatr Child Health 2009; 14(4): 231-7.
- Flodgren G, Hall AM, Goulding L, et al. Tools developed and disseminated by guideline producers to promote the uptake of their guidelines. Cochrane Database of Systematic Reviews 2016: Issue 8. Art. No.: CD010669.
- Gagliardi AR, Brouwers MC. Integrating guideline development and implementation: analysis of guideline development manual instructions for generating implementation advice. Implement Sci 2012; 7(1): 67.
- Walker R, Schultz C, Sonn C. Cultural Competence - Transforming policy, services, programs and practice. In: Dudgeon P, Milroy H, Walker R, eds. Working Together Aboriginal and Torres Strait Islander Mental Health and Wellbeing Principles and Practice. Perth, WA: Telethon Institute for Child Health Research/Kulunga Research Network; 2014: 195-220.
- Sherwood J, Lighton S, Dundas K, et al. Who are the experts here?: Recognition of Aboriginal women and community workers in research and beyond. AlterNative: An International Journal of Indigenous Peoples 2015; 11(2): 177-90.
- Payne J, France K, Henley N, et al. Paediatricians' knowledge, attitudes and practice following provision of educational resources about prevention of prenatal alcohol exposure and fetal alcohol spectrum disorder. J Paediatr Child Health 2011; 47(10): 704-10.
- Elliott E, Payne J, Morris A, Haan E, Bower C. Fetal alcohol syndrome: a prospective national surveillance study. Archives of Disease in Childhood 2008; 93(9): 732-7.
- Hall & Partners Open Mind. Women Want to Know project evaluation. Canberra: Foundation for Alcohol Research and Education (FARE); 2016.
- Glasgow RE, Vinson C, Chambers D, Khoury MJ, Kaplan RM, Hunter C. National Institutes of Health Approaches to Dissemination and Implementation Science: Current and Future Directions. Am J Public Health 2012; 102(7): 1274-81.