FASD Diagnostic Instrument Trial and Implementation

What is this research about?

 

In 2012 the Australian FASD Collaboration submitted a report to the Commonwealth Department of Health and Ageing on recomendations for a diagnostic instrument for FASD in Australia. Read about this project

 

Prior to national implementation, the proposed  diagnostic instrument for FASD in Australia and draft guide required expert review and piloting in the clinical environment to evaluate their feasibility, utility and appropriateness for the Australian context.

 

The Commonwealth Department of Health provided funding for a feasibility trial in 2014-2015.

 

 

 

Who conducted this research?

 

Researchers

  • Professor Carol Bower, Principal Senior Research Fellow Telethon Kids Institute
  • Professor Elizabeth Elliott, Professor in Paediatrics and Child Health University of Sydney
  • Dr Rochelle Watkins, Senior Research Fellow Telethon Kids Institute

 

 

Steering Group

 

A national Steering Group was formed to oversee the implementation of the project. The Steering Group included stakeholders with expertise in clinical services and consumer and Indigenous representatives.

 

  • Professor Carol Bower (Chair): Princiapl Senior Research Fellow Telethon Kids Institute
  • Mr Scott Avery: Director Policy and Research First Peoples Disability Network
  • Dr Felicity Collins: Head Deaprtment of Clinical Genetics Sydney Children's Hospital Network (Westmead)
  • Dr Jennifer Delima: Director Addicition and Clinical Forensic Medicine Alcie Springs Hospital
  • Professor Elizabeth Eliott: Paediatrician Sydney Children's Hospital Network (Westmead) and Professor in Paediatrics and Child Health
  • Dr James Fitzpatrick*: Paediatrician and McCusker Clinical Research Fellow Telethon Kids Institute
  • Ms Andrea Lammel: Brain Mind Research Institue Faculty of Health University of Sydney
  • Ms Vicki Russell*: Chief Executive Officer National Organisation for Fetal Alcohol Spectrum Disorders Australia
  • Dr Doug Shelton*: Paediatrician, Clinical Director Community Child Health and Medical Director Children's Services
  • Dr Linda So: Paediatrician Representative Royal Australian College of Physicians
  • Dr David Thomas: Paediatrician Representative Royal Australian College of Physicians
  • Dr Amanda Wilkins*: Paediatrician WA Child Development Service and Honorary Clinical Research Fellow Telethon Kids Institute
  • Dr Marcel Zimmit: Paediatrician, Sydney Children's Hospital Network (Westmead)

* Also member of the Expert Review Panel

 

Project Team member: Ms Juanita Doorey

 

 

Expert Review Panel

An Expert Review Panel was formed to provide specific expertise on diagnosis.

  • Professor Elizabeth Elliott (Chair): Sydney Children's Hospital Network (Westmead) and Professor in Paediatrics and Child Health
  • Dr Marcel Zimmit: Paediatrician, Sydney Children's Hospital Network (Westmead)
  • Dr James Fitzpatrick: Paediatrician and McCusker Clinical Research Fellow Telethon Kids Institute
  • Dr Amanda Wilkins: Paediatrician WA Child Development Service and Honorary Clinical Research Fellow Telethon Kids Institute
  • Dr Doug Shelton: Paediatrician, Clinical Director Community Child Health and Medical Director Children's Services
  • Ms Vicki Russell: Chief Executive Officer National Organisation for Fetal Alcohol Spectrum Disorders Australia

 

 Project Team member: Ms Juanita Doorey

 

 

 

How did consumers and the community participate in this research?

 

We had consumer representatives on our Steering Group who assisted us in providing resources to health professionals and families about diagnosis and management of FASD.    

 

 

 

What have we done?

 

We have:

  • Developed an activity implementation plan
  • Established a Steering Group and Expert Review Panel to oversee implementation of the project and to provide expert advice on the development and final review of the diagnostic instrument and Guide for its use.
  • Completed retrospective case reviews using the draft diagnostic instrument, with members of the Expert Review Panel making recommendations for revisions to the instrument and guidelines prior to the feasibility trial in the clinical environment
  • Conducted a feasibility trial with clinicians from a range of settings (metropolitan, regional, rural, remote) to trial the diagnostic instrument across Australia.  Parents and guardians of children undergoing diagnostic assessment were also invited to provide feedback on their experience of the diagnostic process and the resources for families.
  • Revised the diagnostic instrument and Guidelines based on feedback from the trial and submitted a draft final report to the Commonwealth Department of Health in December 2015.  An online training module has also been developed to facilitate national implementation of the diagnostic instrument

 

 

We will:

  • After consideration of the new Canadian Guidelines (released 14 December 2015) by the Steering Group in early 2016 and modifications incorporated as required, the Australian diagnostic instrument, Guide and on-line training modules will be widely disseminated, including through professional colleges. 

 

 

Benefits from this research

 

The benefits of this research include:

  • improved diagnostic capacity
  • earlier diagnosis of children and therefore earlier interventions and outcomes for children with FASD and their families
  • beter understanding of how common FASD is in Australia and to provide better evidence to advocate for prevention and therapy services

 

 

 For more information about this project please contact Juanita Doorey