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

Objective Canadian fetal alcohol spectrum disorder (FASD) guidelines encourage an age-specific interdisciplinary diagnostic approach. However, there is currently no standard-of-care regarding FASD diagnosis disclosure and few studies document Canadian FASD clinical capacity. Our objectives were to describe clinical capacity (defined as skills and resources) for FASD assessment, diagnosis, disclosure and support in Canada. Design, setting and participants Data were drawn from the CanDiD study, a cross-sectional investigation of Canadian FASD clinical capacity. Forty-one clinics participated in the study. Data were collected in 2021 on the number and types of health professionals included in the assessment and diagnostic teams, the presence (or absence) of a minor patient when the FASD diagnosis is disclosed to parents/guardians, who is responsible for the diagnosis disclosure, the use of explanatory tools, and the types of support/counselling services available. The proportion of clinics that follow the Canadian interdisciplinary diagnostic guidelines by age group is described among participating clinics. Results Overall, 21, 13 and 7 specialised FASD clinics were in Western/Northern, Central and Atlantic Canada, respectively. The number of referrals per year surpassed the number of diagnostic assessments completed in all regions. Approximately, 60% of clinics who diagnosed FASD in infants and preschool children (n=4/7 and 15/25, respectively) followed the interdisciplinary guidelines compared with 80% (n=32/40) in clinics who diagnosed school-aged children/adolescents. Diagnostic reporting practices were heterogeneous, but most used an explanatory tool with children/adolescents (67%), offered support/counselling (90-95%) and used case-by-case approach (80%) when deciding who would disclose the diagnosis to the child/adolescent and when. Conclusions Limited diagnostic capacity and lack of FASD resources across Canada highlights a critical need for continued FASD support. This study identifies gaps in assessment, diagnosis and reporting practices for FASD in children/adolescents across Canada.