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Expert Recommendations for Neurodevelopmental Screening in Children with Craniosynostosis: A Consensus Report from
Naman Baraya1, Lia Thibodaux2, Arianna Martin3
1School of Medicine, Washington University in St. Louis, St. Louis, MO, USA.
Insights
This study proposes a standardized neurodevelopmental screening protocol for children with craniosynostosis to identify delays early. The recommended timeline aims to improve long-term outcomes through timely intervention.
Area of Science:
- Neurodevelopmental disorders
- Pediatric neurosurgery
- Craniosynostosis care
Background:
- Craniosynostosis requires standardized neurodevelopmental screening post-surgery.
- Existing protocols lack a structured timeline for assessments.
- Early identification of delays is crucial for intervention.
Purpose of the Study:
- To propose a standardized neurodevelopmental screening protocol for children with craniosynostosis.
- To establish a structured timeline for assessments from infancy through adolescence.
- To facilitate early detection of developmental delays and cognitive deficits.
Main Methods:
- Expert consensus meetings with pediatric neuropsychologists and psychologists.
- Literature review to identify screening tools and timelines.
- Protocol refinement with a multidisciplinary craniosynostosis research group.
Main Results:
- A screening protocol tailored to developmental stages was recommended.
- The protocol integrates caregiver input and direct assessments.
- Feasibility was supported, but barriers like specialist availability and insurance were noted.
Conclusions:
- A scalable neurodevelopmental screening protocol for craniosynostosis care is proposed.
- Clinical implementation can enhance early identification and intervention.
- Improved long-term outcomes are anticipated with this protocol.
Abstract:
ObjectiveThis 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.DesignTwo 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.SettingThe protocol is intended for implementation in multidisciplinary craniosynostosis clinics at tertiary care institutions across the United States.Patients, ParticipantsThe study involved pediatric neuropsychologists and psychologists with expertise in neurodevelopment, as well as neurosurgeons and craniofacial specialists of the SynRG research group.InterventionsThe 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 MeasuresThe study focused on feasibility, clinical utility, and the ability of the proposal to detect developmental concerns among craniosynostosis patients early.ResultsThe 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.ConclusionsThe 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.
