Parental perceptions of neurodevelopment in toddlers following craniosynostosis repair

Introduction: The relationship between nonsyndromic craniosynostosis and neurodevelopment remains controversial. Beyond standardized testing, little data exist about parental perceptions of their child's development. Methods: Parents of children who underwent cranial vault remodeling for nonsyndromic craniosynostosis from 2011 to 2015 were asked to complete an anonymous survey. Results: Twenty-two parents (31%) completed the survey. Patients included 52.4% males and 47.6% females with a mean age at surgery of 9.2 months and mean follow-up time of 19.8 months. Craniosynostosis types were primarily metopic (45%) and coronal (35%). The mean score for overall satisfaction with head shape with a maximum score of 10 was 9.2 (range 5-10). When answering whether their child is different for the better other than appearance with a 5 rating as ''strongly agree,'' the mean score was 3.8 (range 1-5). When asked whether their child's motor, speech and behavior, or attention were different following surgery, the majority responded ''No'' (74%, 83%, and 67%, respectively). All parents would have their child undergo surgery again or recommend surgery to another family. There were no statistically significant differences when stratifying by age at surgery or length of follow-up. When stratifying by sex, parents of males gave higher ratings for whether their children were better other than appearance compared with females, 4.8 versus 3.1 (P0.031). Discussion: Parents rated their child's neurodevelopment as largely age-appropriate following cranial vault remodeling. These findings are concordant with the majority of formal, standardized testing for this age group. Assessing parental perceptions once children enter school age may reveal increased developmental delays.