Behavioural and Psychological Functioning of Children and Adults with Sagittal Synostosis

Research examining the behavioural and psychological functioning of children and adults with sagittal synostosis (SS) is scarce, often disparate, and lacks well-matched control groups. Clinicians are therefore often unable to provide families with guidance about their child’s anticipated functioning. Social media channels were used to recruit community-based parents of children with SS, or adults with SS ( n = 56) and an age- and sex-matched control group ( n = 56). Families completed an online survey encompassing a range of demographic and clinical variables and a comprehensive battery of validated questionnaires. Surveys were either parent-rated (children 2 to < 5 years), both parent-rated and self-reported (children 5 to ≤ 18 years), or self-reported only (adults ≥ 19 years). Results show that for both unadjusted and adjusted (SES) analyses, children and adults were functioning at a similar level to their peers. Whilst mean parent-rated scores generally indicated that children with SS were experiencing slightly more difficulties, group differences were not statistically significant. Most adjusted Hedges’ g effect sizes were trivial ( g = .10) to small ( g = .20). Nonetheless, more children with SS were assessed as having clinically significant problems on each composite of the Behavior Assessment System for Children 3 rd Ed. In addition, screening rates of Attention Deficit Hyperactivity Disorder (18%; Behavior Rating Inventory of Executive Function 2) and Autism Spectrum Disorder (15%; Social Responsiveness Scale-2), in children with SS, were high. Findings suggest that children with SS should be monitored and referrals for appropriate support made readily available, as required.