Neurodevelopmental disorders (ESSENCE): Early detection and outcome in adulthood

Abstract

Objectives: Examine outcomes in adulthood for a group of individuals diagnosed with fetal alcohol spectrum disorders (FASD), and for another group during childhood diagnosed with attention-deficit/ hyperactivity disorder (ADHD) with concurrent developmental coordination disorder (DCD). In addition, to also examine the usefulness of a parental screening questionnaire for concerns regarding neurodevelopmental problems (NDPs) in 11-year-old children. Methods and results: Papers I-III reported on two population-based cohorts, and paper IV on a school-based cohort, all three conducted in a Swedish setting. In paper I, 37 adoptees diagnosed with FASD in childhood were reassessed as young adults by a multidisciplinary team. At a median age of 22 years (range 18-28), a majority were dependent on social support, had a psychiatric disorder (most commonly ADHD) and exhibited stunted growth and a declining intellectual quotient compared with childhood. In paper II, a group with ADHD+DCD (n=62), an index comparison group without neurodevelopmental disorders (n=51) and a registry-matched group (n=360) were followed from middle childhood into young adulthood through national registers. At a median age of 30 years, the ADHD+DCD group had significantly higher rates of psychiatric diagnoses, prescriptions of psychoactive medications and occurrence of sick pension than both comparison groups, although a substantial minority in all groups did not experience any of these four adverse outcomes. Paper III reported on the relative contribution from symptoms at nine years of age, in predicting a score of seven adverse outcomes in adulthood for the index and comparison groups (n=60+50). The strongest predictors at age 9 were symptoms of conduct disorder, oppositional defiant disorder, ADHD and motor dysfunction. Combining the six strongest predictors (adding depressive symptoms and autistic traits) explained 40% of the variance in the adverse outcome score. In paper IV, 11-year-old children attending regular school (n=223) participated in a NDP work-up, and parents completed the ESSENCE-Q screening questionnaire (range 0-24) for early concerns regarding NDPs. A cutoff of ≥3 had the highest accuracy (78%) with a negative predictive value of 82% in detecting clinically impairing NDPs. Conclusions: Outcome of NDDs in adulthood is variable, and prognosis is informed by both etiological aspects and symptom load in childhood. Active ascertainment of children with clinically impairing NDPs is feasible with a parental screening questionnaire, although preferably in conjunction with other screening methods.