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Longitudinal Outpatient and School-Based Service Use among Children with Nonsyndromic Craniosynostosis
Connor J Peck1, Alexandra Junn1, Kitae E Park1
1From the Department of Surgery, Division of Plastic and Reconstructive Surgery, and the Child Study Center, Yale University School of Medicine.
Insights
Supportive services are frequently used by children with nonsyndromic craniosynostosis. Predictors for service use include male sex, African American race, higher income, and sagittal synostosis.
Area of Science:
- Pediatric surgery
- Developmental pediatrics
- Medical genetics
Background:
- Nonsyndromic craniosynostosis is linked to neurodevelopmental issues.
- Supportive service needs for these children are often overlooked.
- This study focuses on service utilization and its predictors.
Purpose of the Study:
- Assess the prevalence of supportive services in children with nonsyndromic craniosynostosis.
- Identify factors predicting the use of these services.
- Inform clinical practice and family support.
Main Methods:
- Surveyed parents of children with nonsyndromic craniosynostosis from an online support network.
- Collected data on outpatient and school-based service use.
- Utilized stepwise regression to identify predictors of service utilization.
Main Results:
- 45% of parents reported using at least one outpatient service.
- Speech and physical therapy were most common; psychology/psychiatry increased with age.
- School-based services were common for academic/behavioral issues.
- Predictors included male sex, African American ethnicity, higher income, siblings, older age at surgery, and sagittal synostosis.
Conclusions:
- Children with nonsyndromic craniosynostosis frequently utilize supportive services.
- These services represent a significant care burden for families.
- Multifactorial predictors emphasize the need for interdisciplinary collaboration for comprehensive care.
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.
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