Craniofacial Collaboration UK: Long-Term Developmental Outcomes of Single Suture Craniosynostosis

Abstract

Objective

This article explores the long-term developmental outcomes of children diagnosed with single suture craniosynostosis (SSC).

Design/participants

Data were collected from an opportunity sample of 440 children who received a routine developmental screening assessment in 3 highly specialized craniofacial centers (HSCC) in the United Kingdom between July 2015 and July 2024. All children were assessed with the Ages and Stages Questionnaire-Third Edition (ASQ-3) between 3 and 5 years of age and the Wechsler Abbreviated Scale of Intelligence-Second Edition (WASI-II) at 7 and 10 years of age.

Results

The majority of children with SSC were in the average range across most developmental and cognitive domains. On the ASQ, 24% of children were found to be “delayed” on 1 or more ASQ-3 domains; 8% being found to be delayed on all domains. Delays in fine and gross motor skills were found in early childhood, and in perceptual reasoning skills later on. Using path analysis, it was shown that early delays, especially in fine and gross motor skills, persisted over time and were associated with an increased risk of subtle cognitive deficits in middle childhood. A delay in any 1 developmental domain found before the age of 5 was associated with an IQ difference of around 1 standard deviation below the normative mean on cognitive tests administered in middle childhood.

Conclusions

For most children with SSC, there is no evidence of any impairment in cognitive development. However, for the small minority, delays found in early childhood persisted into middle childhood.