Australia has no screening or diagnostic services for FASD and no national guidelines for screening and diagnosis. Currently, doctors often miss or are unaware of the key clinical criteria for the diagnosis of a FASD.
About the project
The study was funded by the Commonwealth Department of Health and Ageing. The project was conducted between August 2010 and May 2012.
The aim of this project was to develop an instrument (set of tests and measurements) that could be used to diagnose FASD in Australia. Early and accurate diagnosis will improve health outcomes and quality of life for individuals with FASD and their families.
The Australian FASD Collaboration (Steering Group)
- A national group of highly qualified and experienced professionals and community members
- Dedicated to the prevention, diagnosis and care of children with a Fetal Alcohol Spectrum Disorder
- Track record for conduct and dissemination of research (including research in Indigenous communities), health professional and community education, advocacy and policy development about alcohol use in pregnancy and Fetal Alcohol Spectrum Disorders.
Members of the Collaboration
- Winthrop Research Professor Carol Bower, Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia
- Professor Elizabeth Elliott AM, University of Sydney and the Children's Hospital at Westmead
- Dr Lucinda Burns, Nationa Drug and Alcohol Research Centre, University of NSW
- Ms Maureen Carter, Nindilingarri Cultural Health Services, Fitzroy Crossing WA
- Ms Heather D'Antoine, Menzies School of Health Research, Charles Darwin University
- Dr James Fitzpatrick, The George Institute for Global Health, University of Sydney
- Assoc Prof Jane Halliday, Murdoch Childrens Research Institute, University of Melbourne
- Ms Lorian Hayes, Centre for Chronic Disease, University of Queensland
- Assoc Prof Jane Latimer, George Institue for Global Health, University of Sydney
- Ms Anne Mckenzie, Telethon Institute for Child Health Research and School of Population Health, The University of Western Australia
- Ms Sue Miers AM, National Organisation for Fetal Alcohol Spectrum Disorders Australia
- Dr Raewyn Mutch, Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia and Child and Adolescent Health Service WA Department of Health
- Dr Colleen O'Leary, Centre for Population Health Research Curtin University and Telethon Institute for Child Health Research
- Dr Jan Payne, Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia
- Dr Elizabeth Peadon, Children's Hospital at Westmead
- Ms Anne Russell, Russell Family Fetal Alcohol Disorders Association
- Dr Amanda Wilkins, Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia and Child and Adolescent Health Service WA Department of Health
- Ms Heather Jones, Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia
- Dr Rochelle Watkins, Telethon Institute for Child Health Research, Centre for Child Health Research, The University of Western Australia
How was this research conducted?
We worked to ensure that the research we conducted did not harm others and that the people who participated in the project were treated with respect.
Ethics approval helps to ensure that research complies with established guidelines such as the National Statement on Ethical Conduct in Human Research.
Ethics approval for the 'Development of a screening-diagnostic instrument for FASD in Australia' project was granted by the University of Western Australian Health Research Ethics Committee and the WA Aboriginal Health Information and Ethics Committee.
A systematic review of literature published worldwide (including government, other websites and reports) was undertaken. Information from other countries on screening and diagnostic tests, procedures and guidelines was considered for their suitability for use in Australia.
A formal consensus method (Delphi Process) was used to enable a wide range of knowledge and experience to be synthesised and brought together to meet the project aim to develop an instrument that can be used to improve the identification and/or diagnosis of FASD in Australia.
Participants in the Delphi process included:
- Medical practitioners - paediatricians, neonatologists, general practitioners, geneticists, obstetricians, psychiatrists
- Nurses - clinical, midwives, maternal and child health, practitioners
- Clinical Psychologists
- Occupational Therapists
- Speech Pathologists
- Aboriginal Health Workers
- Social Workers
The Delphi process was administered as an on-line questionnaire over two rounds. It was designed so that participants could easily complete the questionnaire in a number of sessions. Participants were recruited via invitations to peak medical colleges and societies, recommendations by members of the Steering Group and through the website and newsletter. 139 health professionals participated in the Delphi process.
Community and Consumer Workshops
To ensure that consumers and the community could be actively engaged in this project outside the formal Delphi process, we used small discussion groups and a 'world café' process to explore questions about alcohol and pregnancy. This process was called a 'Community Conversation'. Community Conversations were held in Perth (December 2010) and Cairns (February 2011). 32 women particpated the community conversations.
The purpose of the alcohol and pregnancy community conversation was to provide input to the Steering Group for use when developing the screening and diagnostic instrument. The community voice aimed to gather information from consumers and the community who are not as well informed about FASD in a manner that was non-judgemental. It was particularly important when the Steering Group was considering questions that maybe asked of women as part of the screening tool. The Community Conversation was an important foundation for meaningful and inclusive consumer and community participation.
Steering Group Workshop
The second stage of the formal consensus process used a consensus development conference (Steering Group Workshop) to review the outcomes of the literature review, the Delphi process and community conversations. The Steering Group applied these findings to the development of the final screening and diagnostic instrument.
Clinician and Consumer Subgroups
Following the workshop a subgroup of paediatricians and medical practitioners reviewed the workshop outcomes related to diagnosis and constructed the final instrument. A three-member consumer subgroup was formed to review the workshop outcomes related to consumer resources and develop the final consumer resources for inclusion in the diagnsotic instrument.
Benefits of this Research
The development of a national screening or diagnostic tool which can be used nationally will:
- Aid early recognition of Fetal Alcohol Spectrum Disorders;
- Improve access to health and education interventions and hence health and educational outcomes for babies, children or young people diagnosed with a Fetal Alcohol Spectrum Disorder; and
- Improve the quality of life for children and families affected by a Fetal Alcohol Spectrum Disorder
Outcomes from this research
This project has been completed and a final report submitted to the Commonwealth Department of Health and Ageing.
Watkins RE, Elliott EJ, Mutch RC, Latimer J, Wilkins A, Payne JM, Jones HM, Miers S, Peadon E, McKenzie A, D'Antoine HA, Russell E, Fitzpatrick J, O'Leary CM, Halliday J, Hayes L, Burns L, Carter M, Bower C. Health professionals' perceptions about the adoption of existing guidelines for the diagnosis of fetal alcohol spectrum disorders in Australia. BMC Pediatr. 2012 Jun 14;12(1):69.
Watkins RE, Elliott EJ, Mutch RC, Payne JM, Jones HM, Latimer J, Russell E, Fitzpatrick JP, Hayes L, Burns L, Halliday J, D'Antoine HA, Wilkins A, Peadon E, Miers S, Carter M, O'Leary CM, McKenzie A, Bower C. Consensus diagnostic criteria for fetal alcohol spectrum disorders in Australia: a modified Delphi study. BMJ Open. 2012 Oct 25;2(5). doi:pii: e001918. 10.1136.
Watkins E Rochelle, Elliott J Elizabeth, Halliday Jane, O'Leary M Colleen, D'Antoine Heather, Russell Elizabeth, Hayes Lorian, Peadon Elizabeth, Wilkins Amanda, Jones M Heather, et al: A modified Delphi study of screening for fetal alcohol spectrum disorders in Australia. BMC Pediatr2013, 13:13.
Jones HM, McKenzie A, Miers S, Russell E, Watkins RE, Payne JM, Hayes L, Carter M, D'Antoine HA, Latimer J, Wilkins A, Mutch R, Burns L, Fitzpatrick J, Halliday J, O'Leary CM, Peadon E, Elliott EJ, Bower C. Involving consumers and the community in the development of a diagnostic instrument for Fetal Alcohol Spectrum Disorders in Australia. BMC Health Research Policy and Systems 2013, 11:26