Longitudinal Outpatient and School-Based Service Use among Children with Nonsyndromic Craniosynostosis

Background: Although nonsyndromic craniosynostosis has been associated with neurodevelopmental sequelae, a lesser amount of emphasis has been placed on the need for related supportive services. This study assessed the prevalence of such services among children surgically treated for nonsyndromic craniosynostosis and identified predictors of service use. Methods: Parents of children with nonsyndromic craniosynostosis were recruited from an online craniosynostosis support network and surveyed regarding their child's use of various outpatient and school-based services. Multiple stepwise regression was performed to identify predictive variables for each type of intervention. Results: A total of 100 surveys were completed. Of these, 45 percent of parents reported use of one or more outpatient support services for their children. The most commonly used services were speech therapy (26.0 percent) and physical therapy (22.0 percent), although the use of services such as psychology/psychiatry increased among older children (18.2 percent in children aged 6 to 10 years). Among school-age children (n = 49), the majority of parents (65.3 percent) reported school-based assistance for their children, most commonly for academic (46.9 percent) or behavioral (42.9 percent) difficulties. Significant predictive variables (p < 0.05 following stepwise regression) for increases in various outpatient and school-based services included male sex, African American race/ethnicity, higher parental income, the presence of siblings in the household, increased age at the time of surgery, and sagittal synostosis. Conclusions: Parents of children with nonsyndromic craniosynostosis reported frequent use of outpatient and school-based supportive services throughout childhood. These services may incur a significant burden of care on families. The multifactorial nature of predictive models highlights the importance of cross-disciplinary collaboration to address each child's longitudinal needs.