The Craniofacial Collaboration UK: Developmental Outcomes in 5-Year-Old Children With Metopic Synostosis

Abstract

The Craniofacial Collaboration (CC-UK) was setup in 2015 as a joint initiative between the Psychology teams attached to the 4 highly specialized craniofacial centers in the United Kingdom. The CC-UK aims to address key limitations in the existing craniofacial literature by applying strict exclusion criteria and collating clinical data on a homogenous sample of children. This article reports the fourth wave of data collection from the CC-UK, with the analysis of developmental and behavioral outcomes for children with metopic synostosis at 5 years old. Previous data for sagittal synostosis at 3 and 5 years, and metopic synostosis at 3 years, have been presented. This paper offers the first analysis of developmental and behavioral parent-report measures at school age for metopic synostosis. All children in the current data set had primary corrective surgery. Findings highlight similar patterns to that of previous research among children with single-suture craniosynostosis, as well as earlier CC-UK analyses, with the majority falling within 1 standard deviation of the normative mean. However, differences across key behavioral and emotional domains, with some areas reporting heightened concerns compared with those detected among sagittal groups, may suggest that subtle differences between individual diagnostic groups are present. This further highlights the importance of utilizing homogenous samples within the field of craniofacial research. To further build upon this work, and to provide a greater understanding of how these difficulties and concerns may develop, or diminish, over time, further consideration to longitudinal outcomes is needed for individual diagnostic groups. Through this collaboration, the authors seek to achieve this goal in their future work.

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

“…Parental reports of behavioral and emotional outcomes (SDQ) at 7 and 10 years indicated similar findings to that observed in previous CC-UK analyses of younger MS children, 25,29 with the majority falling within the average range. Difficulties with prosocial skills have been reported in previous CC-UK studies, indicated by a greater proportion of MS children in the "very high" scoring range at 3 and 5 years.…”

“…Parental reports of behavioral and emotional outcomes (SDQ) at 7 and 10 years indicated similar findings to that observed in previous CC-UK analyses of younger MS children, 25,29 with the majority falling within the average range. Difficulties with prosocial skills have been reported in previous CC-UK studies, indicated by a greater proportion of MS children in the “very high” scoring range at 3 and 5 years 25,29 . Interestingly, the prosocial domains at 7 and 10 years had the highest percentage of children falling within the “close to average” range, suggesting that these earlier concerns had possibly diminished.…”

“…Previous research has questioned whether some small but observed differences in developmental and behavioral outcomes among younger age groups may increase, or diminish, as children with MS get older. 25,29 The present data offer further insight, with the suggestion that the subtle difficulties in behavioral and emotional domains may continue to present at later ages. However, these were only observed on parent report measures.…”

“…Difficulties with prosocial skills have been reported in previous CC-UK studies, indicated by a greater proportion of MS children in the "very high" scoring range at 3 and 5 years. 25,29 Interestingly, the prosocial domains at 7 and 10 years had the highest percentage of children falling within the "close to average" range, suggesting that these earlier concerns had possibly diminished.…”

“…As detailed in previous literature, 19 the CC-UK developed a clinical protocol to monitor developmental progress among children with SSC across specific diagnostic groups at multiple time points. To date, analyses of outcome measures for development, behavior, and emotional well-being among children with SS and MS at 3 and 5 years have been presented, 24,25,28,29 with the majority of children with SSC performing within 1 standard deviation of the normative mean across all measures. However, for MS specifically, heightened areas of concern were reported by parents on outcomes of peer difficulties and prosocial skills, 25 and further research to explore the extent to which these difficulties may develop, or diminish, over time, is required.…”