Development of a diagnostic instrument for FASD in Australia

What is this research about?

 

Fetal Alcohol Spectrum Disorders (FASD) is a term used to refer collectively to a range of disorders caused by prenatal alcohol exposure.  The effects of fetal alcohol exposure are life-long and may not be seen at birth. A minority of children will have Fetal Alcohol Syndrome or Partial Fetal Alcohol Syndrome which can be identified by distinctive facial features, poor growth and abnormalities of the brain or neurological problems. The majority of children with FASD will look normal but will have disabilities which can include developmental delay, poor executive functioning (planning, organising, paying attention to and remembering details, and managing time and space) and problems with learning and/or behavioural problems associated with the primary brain damage. These can lead to secondary disabilities such as poor school performance, unemployment, substance abuse, mental health problems and justice system engagement.

 

Early and accurate diagnosis will improve health outcomes and quality of life for individuals with FASD and their families. The aim of this project was to develop an instrument (set of tests and measurements) that could be used to diagnose FASD in Australia.

 

Ethics Approval
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 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.

 

Funding

The project was funded by the Commonwealth Department of Health and Ageing. The research was conducted between August 2010 and May 2012.

 

 

Who conducted this research? 

 

This research was conducted by the Australian FASD Collaboration

  • 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

 

Lead Investigators

  • Winthrop Research Professor Carol Bower, Telethon Kids Institute , The University of Western Australia
  • Professor Elizabeth Elliott AM, University of Sydney and the Children's Hospital at Westmead

 

Senior Consultants

  • 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 Institute for Global Health, University of Sydney
  • Ms Anne Mckenzie, Telethon Kids Institute 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 Kids Institute , 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 KIds Institute
  • Dr Jan Payne, Telethon Kids Institute , 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 Kids Institute , The University of Western Australia and Child and Adolescent Health Service WA Department of Health

 

Project Team

  • Ms Heather Jones, Telethon Kids Institute,  The University of Western Australia
  • Dr Rochelle Watkins, Telethon Kids Institute, The University of Western Australia

 

For information on this project and any updates please contact Dr Rochelle Watkins

 


What did we do?

 

Literature Review

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.

 

Delphi Process

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
  • Physiotherapists
  • 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 cafĂ©' 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. 

Read a summary of the Community Conversations

 

Consensus Development Workshop

The second stage of the formal consensus process used a consensus development workshop to review the outcomes of the literature review, the Delphi process and community conversations. The FASD Collaboration applied these findings to the development of the final 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. 

 

 

 

What did we find? 

Read the Summary of consensus recommendations for the diagnosis of FASD in Australia and the Recommended Australian FASD Diagnostic categories and criteria. These tables are extracts from:

 

Watkins RE, Elliott EJ, Wilkins A, Mutch RC, Fitzpatrick JP, Payne JM, O'Leary CM, Jones HM, Latimer J, Hayes L, Halliday J, D'Antoine H, Miers S, Russell E, Burns L, McKenzie A, Peadon E, Carter M, Bower C. Recommendations from a consensus development workshop on the diagnosis of fetal alcohol spectrum disorders in Australia. BMC Pediatr. 2013, 13:156.

  

 

 

How will this research help?

The adoption and implementation of an instrument of standard diagnostic criteria for FASD in Australia will:

  • enable earlier diagnosis and management of FASD and improve health outcomes
  • enable us to estimate the number of chidlren with FASD and improve reporting
  • inform programs for the management and prevention of FASD
  • improve training and awareness of FASD amongst health professionals and other service providers
  • optimise service provision and quality of life for people with FASD and their families 

 

 

 

Outcomes from this research 

 

Final Report

A two-volume final report was submitted to the Commonwealth Department of Health and Ageing in May 2012.

 

FASD Project Summary Report

Read the Summary Report

 

Publications

  1. Rochelle E Watkins, Elizabeth J Elliott, Amanda Wilkins, Jane Latimer, Jane Halliday, James P Fitzpatrick, Raewyn C Mutch, Colleen M O'Leary, Lucinda Burns, Anne McKenzie, Heather M Jones, Janet M Payne, Heather D'Antoine, Sue Miers, Elizabeth Russell, Lorian Hayes, Maureen Carter, Carol Bower. Fetal alcohol spectrum disorder: development of consensus referral criteria for specialist diagnostic assessment in Australia. BMC Pediatrics 2014, 14:178
  2. Watkins RE, Elliott EJ, Wilkins A, Mutch RC, Fitzpatrick JP, Payne JM, O'Leary CM, Jones HM, Latimer J, Hayes L, Halliday J, D'Antoine H, Miers S, Russell E, Burns L, McKenzie A, Peadon E, Carter M, Bower C. Recommendations from a consensus development workshop on the diagnosis of fetal alcohol spectrum disorders in Australia. BMC Pediatr. 2013, 13:156.
  3. 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
  4. 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 Pediatr. 2013, 13:13.
  5. 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.
  6. 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)

 

 

 

FASD Diagnostic Instrument Trial and Implementation

The Commonwealth Department of Health has awarded a contract to the Telethon Kids Institute to finalise and implement the Australian Diagnostic Instrument. Read more