88 Variables that Impact the Diagnosis of Fetal Alcohol Spectrum Disorder in Ontario

Abstract

BACKGROUND: In Canada, the incidence of Fetal Alcohol Spectrum Disorder (FASD) is estimated to be one in 100 live births. FASD is the leading cause of developmental and cognitive disabilities among Ontario's children. FASD remains a complex diagnosis that requires meticulous gathering of prenatal alcohol exposure history, and extensive neuro-psychological testing. OBJECTIVES: To determine what variables are associated with receiving or not receiving a diagnosis of FASD on initial diagnostic assessment. DESIGN/METHODS: Cross-sectional study design was used. One-thousand and one (1,001) participants including caregivers of individuals with FASD, ages 3 to 25 years, living in urban and rural communities throughout Ontario. Participants completed a structured interviewer-administered questionnaire which elicited information such as clarity of prenatal alcohol exposure history, age at diagnosis, physical signs of FASD identified on diagnosis, history of FASD in the biological family, severity of the condition, co-morbidities, relationship of the individual to the caregiver (biological, adoptive, foster). A stepwise multiple regression analysis was used to identify significant variables which were associated with receiving or not receiving a diagnosis. RESULTS: Having 2 or more facial features consistent with FASD, clarity of prenatal alcohol history, and age under 6 years positively impacted on receiving the diagnosis (p<0.01) of FASD on initial diagnostic assessment. Age between the range of 13 to 18 years (p<0.01), and co-morbidities of depression with a manic component, personality disorder, and autism negatively impacted on making the diagnosis (p<0.001). Despite their age and co-morbidities, these children and youth had clear prenatal alcohol exposure, and met 4 neuro-psychological criteria of Fetal Alcohol Spectrum Disorder. All children in this study eventually received a diagnosis within 2 to 6 years of the initial diagnostic assessment. CONCLUSION: Better understanding of why the FASD teams withheld diagnosis in children who met diagnostic criteria is needed. Implications for practice, policy, and research are discussed.