Developing a National Screening Tool Kit for Those (0 - 18) Identified and Potentially Affected by FASD

Project Chair: Elaine Orrbine, CAPHC
Project Manager: Charlotte Rosenbaum
Project Timeline: April 2007 - March 31, 2008
PHAC contact: Holly MacKay (Tel: 613-941-4441)

Introduction/Background

• On March 1, 2005 the Public Health Agency of Canada (PHAC) endorsed the Canadian Guidelines for the diagnosis of FASD (CMAJ the National Advisory Committee (NAC) for FASD).
• Currently, no valid and reliable screening tools exist for consistent screening of children with possible FASD.
• This limits the ability of health care and allied professionals working with children with behavioral and learning disabilities to consistently screen for FASD and refer for further assessment and diagnosis.

Goal:

• To determine the type and effectiveness of screening tools used by health care and allied providers to identify children 0 - 18 who may require a referral for an FASD diagnosis, and to understand the next steps that would assist in building this tool kit in the future.
  Objectives:
• To survey the literature, consult with key technical experts (key informants) and evaluate FASD screening tools and methods used to refer children to diagnostic clinics
• To develop practical guidelines, or tool kit, for the recommended screening tools
  

Rationale for this project:

Although screening tools for FASD diagnosis do exist in Canada, they are not necessarily used routinely by all health care and allied professionals. They may have not have been developed specifically for this age group - children 0 - 18 - and they may not be validated to ensure their accuracy and sensitivity. To date, screening tools have not been validated use in First Nations / Inuit / Métis communities, or for other ethno cultural groups.

Main project activities:

• Establish advisory work group (completed)
  • Two in-person meetings of the Advisory Workgroup have been held, in addition to conference calls
• Review literature on screening tools for children 0 - 18 (completed)
  • Survey of screening tools/methods and key informants
• Prepare report on practical use of tools
  • Evaluation, critical analysis
• Host Experts Panel to verify data
  • October 29 - 30, 2007 (completed – Proceedings to be posted in January 2008)
  • Participation from across Canada, a variety of about 30 experts
• Host consensus workshop to review draft of preliminary findings and develop report format
  • Workshop planned for February 2008
  • Prepare final tool kit(including all drafts and approvals) by March 31, 2008
    

Project Steering Group Members:

Dr. Sterling Clarren, Canada Northwest FASD Partnership, Research Network
Dr. Albert Chudley, Medical Genetics, University of Manitoba
Dr. Gideon Koren, Motherisk, Hospital for Sick Children (Toronto) and FACE
Ms Ingrid Goh, PhD student, University of Toronto, Hospital for Sick Children (Researcher)
Dr. Ted Rosales, Paediatrician
Ms Elaine Orrbine, President and CEO, CAPHC
Ms Charlotte Rosenbaum, Charlotte Rosenbaum Consulting Services,
Holly MacKay, A/Team Leader, FASD Team, PHAC

FASD Screening Tool Development Project
WORKSHOP PROCEEDINGS
October 29 & 30, 2007

WorkshopProceedings » English | » Français

On March 1, 2005 the Public Health Agency of Canada endorsed the Canadian Guidelines for the diagnosis of Fetal Alcohol Spectrum Disorder (FASD) www.cmaj.ca/cgi/reprint/172/5_suppl/S1.pdf.The capacity, however, of diagnostic clinics is low compared to the prevalence of FASD. The validity and reliability of available screening tools has not yet been verified, limiting the ability of health care and allied professionals across Canada to consistently screen for FASD and refer for further assessment and diagnosis.

In partnership with many FASD experts and organizations, the Canadian Association of Paediatric Health Centres (CAPHC) is currently facilitating a national initiative, funded by the Public Health Agency of Canada, entitled: “Developing a National Screening Tool Kit for Those Identified and Potentially Affected by FASD”. Drs. Albert Chudley, Sterling Clarren, Gideon Koren, and Ted Rosales are the content experts leading the Project’s Steering Committee.

The primary objectives of this initiative are to:

• To survey and critically evaluate FASD screening tools and methods in use in Canada for referral to or acceptance into diagnostic clinics;
• Evaluate practical values (sensitivity, specificity, and predictive values) of these tools;
• Develop practical guidelines (Tool Kit), based on the identified and evaluated tools.
  Accomplishments to date include:
• A survey of FASD Diagnostic Clinics in Canada has been conducted to assess what screening tools and methods are currently being used;
• A critical review of the North American literature on FASD screening tools and methods has been
  conducted;
• A National Advisory Group has been established of recognized content experts from Canada and the United States;
• A National Advisory Group Workshop was held. These Proceedings describe the results of the
  Workshop.

FASD Screening Tool Development Project
WORKSHOP PROCEEDINGS
October 29 & 30, 2007