Motor difficulties, motor‐related health care, and associating factors in children born extremely preterm

Abstract Aim To evaluate the prevalence of non‐cerebral‐palsy (CP) motor difficulties in children born extremely preterm (EPT) in Sweden, and the proportion of children receiving motor‐related health care (MRHC) and related factors. Method An observational, retrospective, cross‐sectional registry study was performed on 856 children (435 males) born EPT at 5 years 6 months available from the Swedish Neonatal Quality Register (SNQ). Children with CP or severe neurodevelopmental disorders were excluded ( n = 137). In total, 856 children had complete data. Motor function was assessed using the Movement Assessment Battery for Children, Second Edition (≤ 5th centile defined as clinically significant difficulty). The SNQ provided data on health care visits, behavioural issues, and neonatal risk factors. MRHC was defined as one or more physiotherapy visits in the past year. Results Clinically significant motor difficulties were present in 218 of 856 (25.5%, 95% confidence interval [CI] = 22.5–28.4) children born EPT; only 30 of 177 (16.9%, 95% CI = 11.4–22.5) of them received MRHC. Receiving MRHC was associated with hyperactivity/inattention difficulties (odds ratio [OR] = 4.43; 95% CI = 1.52–12.88), bronchopulmonary dysplasia (OR = 4.38; 95% CI = 1.49–12.93), and access to additional health care services (OR = 16.07; 95% CI = 2.09–123.40). Interpretation Clinically significant motor difficulties in children born EPT are underestimated and insufficiently managed. Factors associated with receiving MRHC suggest that care is reactive and driven more by comorbidities than motor needs. These findings reveal a critical care gap and underscore the need for standardized international guidelines for extended follow‐up and management of non‐CP motor difficulties.