Neurodevelopmental Outcomes 12 Years After Extremely Preterm Birth in Sweden

OBJECTIVES: We assessed the prevalence of neurodevelopmental disabilities (NDDs; cognition, cerebral palsy, vision/hearing, epilepsy), attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), developmental coordination disorder (DCD), behavior problems, and multimorbidity in a national cohort of children born extremely preterm (EPT, <27-week gestation) to provide a comprehensive understanding of the challenges faced by children born EPT in early adolescence. METHODS: All infants born EPT in Sweden from April 2004 through March 2007 were enrolled in the Extremely Preterm Infants in Sweden Study (EXPRESS). Of 492 survivors at age 12 years, 462 were assessed alongside 373 term-born controls. Standard instruments were used to assess cognition, motor function, and behavior. Parents completed a structured health questionnaire. Diagnoses were obtained from national health registers. RESULTS: Compared with controls, children born EPT exhibited significantly higher rates of moderate/severe NDD (37.4% vs 4.6%), ASD (14.9% vs 2.41%), ADHD (21.2% vs 8.9%), DCD (29.4% vs 5.7%), and behavioral problems (35.3% vs 8.13%; all P < .001). Of children born EPT with no/mild NDD, 8.3% (24/289) were diagnosed with ASD and 14.5% (24/289) with ADHD, and of those with moderate/severe NDD, 26.0% (42/289) were diagnosed with ASD and 32.4% (56/173) with ADHD. Of children born EPT with moderate/severe NDD, 59% exhibited at least 2 co-occurring disabilities/disorders, and in those with no/mild disabilities, comorbidity was 24.9%. In the total EPT cohort, 57.4% were free from moderate/severe NDD and ASD, and 42.0% were free from ASD, ADHD, and DCD. CONCLUSIONS: By age 12 years, a large proportion of children born EPT faced challenges because of NDD, ASD, ADHD, DCD, multimorbidity, and behavioral problems, necessitating multidisciplinary follow-up.