S8A-02 SESSION 8A: METOPIC SYNOSTOSIS THE CC-UK – ROUTINE DEVELOPMENTAL SCREENING PROTOCOL IN THE UK RESULTS FOR CHILDREN WITH METOPIC AND SAGITTAL SYNOSTOSIS AT 3 AND 5 YEARS OF AGE.

Abstract

Introduction: The Craniofacial Collaboration UK (the CC-UK) is a Clinical Psychology-led developmental screening pathway for patients from the 4 Highly Specialised Craniofacial Centres in the UK (HSCC). The current paper is the first comparison across suture types, examining the results for 3 and 5-year-old children with sagittal (SS) and metopic (MS) synostosis. This is the first step towards understanding differences in the presentation of these different diagnostic groups, with the aim of facilitating evidence-led targeting of resources to greatest need. Methods: Parents of 3 and 5-year-old children were asked to complete questionnaires regarding both developmental and behavioural aspects: the Ages and Stages Questionnaire (ASQ) and the Strengths and Difficulties Questionnaire (SDQ). Questionnaires are given to families in advance of attendance at one of the HSCC. As both questionnaires are widely used standardised tools, results can be compared with normative data. Children were excluded from the analysis if they had not previously undergone primary corrective surgery, or had a known diagnosis with a genetic or other condition (such as epilepsy) which might be expected to impact their developmental progress. Results: Response rate ranged from 51% for the SDQ in 3-year olds with SS to 81% for the ASQ at 3. ASQ data are reported for 375 children and SDQ data for 275. Comparison with normative data indicated no major deficits or delays for the majority of children with both SS and MS groups at 3 and 5 years. However, there was a consistent difference in results between the two diagnostic groups at both age groups, with lower mean parental ratings across all domains of the ASQ and greater numbers of concerns related to behavioural and social functioning for both age groups for children with MS on the SDQ. Conclusion: Whilst the majority of children in both diagnostic groups fell within the range that would be expected for their age, children with MS were rated by their parents as performing less well on both developmental and behavioural measures across all domains. This is an important indication that there may be differences in performance related to diagnostic group. Despite attempts to exclude children with known conditions, it is important to consider the higher rate of chromosomal abnormalities and other conditions, such as in vitro exposure to medication, that are present in MS and could have an impact on development.