Using a Common Form for Consistent Collection and Reporting of FASD Data from Across Canada: A Feasibility Study.

Background: This study was undertaken to determine the feasibility of collecting information on individuals newly diagnosed with Fetal Alcohol Spectrum Disorder (FASD) in multi-disciplinary diagnostic programs across Canada.

Objective: To determine the frequencies of specific diagnoses within the spectrum, the frequencies and patterns of specific functional deficits, and the range of recommendations made for intervention and management for children and adults.

Methods: All qualifying clinics in Canada were invited to join this project and complete questionnaires on the patients that were seen during the research period.

Results: Over half of all clinics participated (25/45) and submitted the information requested on 307 individuals, ranging in age from 1 to 42 years. Two hundred and eighty-nine individuals had a diagnosis of FASD and were analysed further. The percent of individuals with Fetal Alcohol Syndrome was 2.1% of those with FASD diagnoses, which was lower than expected based on the literature. The level of disability among the entire FASD was always significant with at least 3 domains measured as severely impaired via the criteria for diagnosis but almost one-quarter were extremely disabled with 6 of a possible 9 brain domains measured significantly impaired. No specific patterns of functional disability were found to represent any significant subgroup of the patients. An average of 13 new recommendations for intervention and management were made for each patient in health, mental health, social services, and education.

Conclusion: Although this was a pilot study with a relatively small sample, it is the largest collection of cases of FASD from multiple sites in one country ever published to our knowledge. It illustrates that important patient information can be collected across clinical programs considering the diagnosis of FASD but only with financial support for time and personnel. Using the methodology of a common data form, consistent data collection can be achieved and patterns and trends can be identified that can help with assuring consistency in diagnosis and with planning for improved patient outcomes.