Characterising fetal alcohol spectrum disorder in Canada: a national database protocol study

Abstract

IntroductionFetal alcohol spectrum disorder (FASD) is one of the most common neurodevelopmental disorders in North America. It is a complex disability, associated with challenges in cognitive, behavioural and socialemotional functioning, as well as an increased risk of physical and mental health comorbidities, and difficulties in daily living across the lifespan. Previous attempts to characterise the profile of this population have been hampered by differences in data collected across studies, regional discrepancies in terminology and definitions, and a lack of tools to integrate comprehensive datasets.Methods and analysisThe goals of this study are to use the Canadian National FASD Database, a national repository of FASD assessment-related information, to better understand the functional profile, comorbidities, intervention needs and difficulties in daily living experienced by individuals assessed for FASD across the lifespan. We will also examine what factors may be the most sensitive predictors of receiving an FASD diagnosis. Data will be analysed from over 3500 records collected between 2010 and 2021 (ongoing) from 26 FASD diagnostic clinics in seven provinces and territories. Data collection is ongoing, and analysis will be performed on a biannual basis to continue to hone our understanding of the profiles, needs and outcomes of individuals assessed for FASD in Canada. This research is critical for refining FASD assessment and diagnostic practice, enabling accurate and early identification of individuals with FASD, and connecting individuals with FASD and their families to comprehensive and effective services and resources to support healthy developmental trajectories.Ethics and disseminationEthics approval for the National FASD Database Project was obtained from the Ottawa Health Science Network Research Ethics Board. As new knowledge is gained from this project, findings will be disseminated through publications, presentations and feedback to participating clinics, with the ultimate goal of informing FASD research, practice and policy.

Psychotropic Medication Usage in Individuals with Fetal Alcohol Spectrum Disorders (FASD) and Psychiatric Co-morbidities in Canada

“…Research on the use of psychotropic medications for people with Autism Spectrum Disorder (ASD) has shown that a key component of providing appropriate and effective prescriptions is treatment provider's knowledge of ASD, and yet general practitioners often do not as additional information on demographics, mental and physical health, behavioral, and medications. 33 The database was originally developed based on the 2005 Canadian FASD diagnostic guidelines. 34 Following the creation and implementation of the 2015 Canadian FASD diagnostic guidelines, the database was revised to reflect the new diagnostic criteria.…”

“…Data were collected from individuals who underwent an FASD assessment and had confirmed PAE. 33 Individuals with PAE who did not receive an FASD diagnosis were included in the database to capture information on the impairments associated with PAE even when diagnostic criteria for FASD were not met, effectively acting as a control group for individuals with confirmed PAE and an FASD diagnosis. This study begins to address the knowledge gap in the use of psychotropic medication for individuals with FASD as well as how the prescription of psychotropic medication is influenced by age, sex, and comorbid psychiatric disorders.…”

“…This study involved a secondary analysis of data from the Canadian National FASD Database (the database), which includes anonymized, in-depth, patient-level information on individuals presenting for an FASD assessment. 33 Ethical approval for using this data was granted by the Research Ethics Board at the University of Saskatchewan (REB# Bio-17-305). Data were provided by FASD diagnostic clinics from seven Canadian provinces and territories, and included diagnostic criteria based upon the Canadian diagnostic guidelines for FASD as well e74 of frequencies (%) for categorical variables and mean and standard deviation for continuous variables.…”

Latent classes of neurodevelopmental profiles and needs in children and adolescents with prenatal alcohol exposure

“…The National FASD Database captures data characterizing clinical and diagnostic findings for individuals assessed for FASD across Canada (see Cook et al, 2021 for full methods). Data for the current study included cases assessed from 2016 onward, thus multidisciplinary teams adhered to the 2016 Canadian FASD Diagnostic Guidelines (Cook et al, 2016) and evaluated the same diagnostic features, including (a) evidence of confirmed PAE above risk thresholds (≥7 standard drinks per week, or ≥2 episodes of drinking of ≥4 drinks on the same occasion); (b) evidence of sentinel facial features including palpebral fissure length (≥2 SD below the mean, <3rd percentile, using recommended norms), 1 and philtrum and upper lip each rated 4 or 5 on 5‐point scale of the University of Washington (UW) Lip‐Philtrum Guide (Astley, 2004); and (c) the presence of severe impairment across ten identified neurodevelopmental domains (see Table S1 for definitions, cut‐off scores, and diagnostic criteria).…”

Canadian clinical capacity for fetal alcohol spectrum disorder assessment, diagnosis, disclosure and support to children and adolescents: a cross-sectional study

“…Fetal alcohol spectrum disorder (FASD), which results from prenatal alcohol exposure (PAE), 1 is one of the most frequent neurodevelopmental disorders in North America. 2 A recent meta-analysis reported that 8% of children exposed to PAE are diagnosed with FASD and that North America has the second highest FASD prevalence after Europe. 3 Children exposed to PAE are at high risk of developing FASD regardless of the frequency or amount of alcohol consumed.…”