Expert Recommendations for Neurodevelopmental Screening in Children with Craniosynostosis: A Consensus Report from the Craniosynostosis Research Neurodevelopmental Working Group (SynRG)

Objective: This study aims to address the gap in standardized neurodevelopmental screening for children with craniosynostosis following surgical intervention. It proposes a structured timeline for assessments to identify developmental delays and cognitive deficits, facilitating early intervention and improved outcomes. Design: Two neurodevelopmental expert consensus meetings were held virtually with pediatric neuropsychologists and psychologists to review existing literature and identify screening tools, timelines, and implementation strategies. The proposed protocol was then presented to multidisciplinary members of the SynRG research group, including surgeons and craniofacial specialists, to refine recommendations. Setting: The protocol is intended for implementation in multidisciplinary craniosynostosis clinics at tertiary care institutions across the United States. Patients, Participants: The study involved pediatric neuropsychologists and psychologists with expertise in neurodevelopment, as well as neurosurgeons and craniofacial specialists of the SynRG research group. Interventions: The proposed screening schedule spans infancy through adolescence, incorporating tools such as the Ages and Stages Questionnaire, NIH Toolbox, and PROMIS measures. Screening intervals align with developmental milestones and academic transitions. Main Outcome Measures: The study focused on feasibility, clinical utility, and the ability of the proposal to detect developmental concerns among craniosynostosis patients early. Results: The panel recommended a screening protocol tailored to key developmental stages, integrating caregiver input and direct assessments. Feedback from the SynRG group supported the protocol's feasibility but highlighted barriers such as neuropsychologist availability and insurance challenges. Conclusions: The proposal offers a scalable protocol to neurodevelopmental screening in craniosynostosis care. Implementation in clinical practice could enhance early identification and intervention, improving long-term outcomes.