The Craniofacial Collaboration UK: Developmental Outcomes in 7- and 10-Year-Old Children With Sagittal Synostosis

Abstract

The Craniofacial Collaboration UK (CC-UK) protocol is a shared agreement across the 4 UK Highly Specialist Craniofacial Centres (HSCCs) to conduct robust neurodevelopmental and psychosocial clinical screening for children with craniosynostosis. This agreement allows for the analysis of outcomes of a homogenous sample of children with single suture craniosynostosis (SSC), a frequent limitation of the existing research. The current study is the latest analysis of CC-UK data on behavioral, cognitive, and psychosocial outcomes. The focus of this analysis is 7- and 10-year-olds with nonsyndromic sagittal synostosis (SS) who have undergone primary corrective surgery and completed routine clinical screening at 1 of the 4 HSCCs since the introduction of the CC-UK protocol. Due to changes in clinical pathways, only data from 3 HSCCs is included to preserve homogeneity. Results show that the majority of children with SS fall within the average range across behavioral and neurodevelopmental domains. A notable exception was a task involving perceptual reasoning and visuomotor skills (Block Design). Although this difference was small and the mean score remained within the average range, it suggests some increased risk of subtle difficulty with such skills for children with SS. Across other measures, there was no consistent evidence of any significantly increased risk of poorer outcomes, in line with findings of previous CC-UK papers. Understanding the psychological phenotype of SS is a key research priority for parents and clinicians, and the current study is another step toward achieving this goal.