Guideline for Care of Patients With the Diagnoses of Craniosynostosis: Working Group on Craniosynostosis

Chaired by Irene M.J. Mathijssen, MD, PhD Participants: The Dutch National Cranial and Facial Deformities Patients and Parents Association (LAPOSA) The Netherlands Society for Ophthalmology The Netherlands Society for Anesthesiology The Netherlands Society for Otorhinolaryngology The Dutch Association for Pediatrics The Netherlands Society for Oral Medicine and Oral and Maxillofacial Surgery The Netherlands Society for Neurosurgery The Netherlands Society for Plastic Surgery The Society for Orthodontists The Netherlands Society for Clinical Genetics The Dutch Association of Psychologists The Netherlands Society for Relationship Counseling and Family Therapy Address correspondence and reprint requests to Irene M.J. Mathijssen, MD, PhD, Deptartment of Plastic and Reconstructive Surgery, and Hand Surgery, Room Sk-1202, Erasmus Medical Center-Sophia, Wytemaweg 80, 3015CN Rotterdam, The Netherlands. E-mail: i.mathijssen@erasmusmc.nl ABSTRACT This guideline for care of children with craniosynostosis was developed by a national working group with representatives of 11 matrix societies of specialties and the national patients’ society. All medical aspects of care for nonsyndromic and syndromic craniosynostosis are included, as well as the social and psychologic impact for the patient and their parents. Managerial aspects are incorporated as well, such as organizing a timely referral to the craniofacial center, requirements for a dedicated craniofacial center, and centralization of this specialized care. The conclusions and recommendations within this document are founded on the available literature, with a grading of the level of evidence, thereby highlighting the areas of care that are in need of high-quality research. The development of this guideline was made possible by an educational grant of the Dutch Order of Medical Specialists. The development of this guideline was supported by an educational grant of the Dutch Order of Medical Specialists. Contents Chapter 1. General introduction  1735 Chapter 2. Introduction to craniosynostosis  1736 Chapter 3. Referral and diagnostics  1737 Chapter 4. Perioperative care  1744 Chapter 5. Surgical treatment of nonsyndromic craniosynostosis  1747 Chapter 6. Surgical treatment of syndromic craniosynostosis—the cranial vault  1751 Chapter 7. Surgical treatment of syndromic craniosynostosis—the face  1753 Chapter 8. Increased intracranial pressure  1762 Chapter 9. Hydrocephalus  1768 Chapter 10. Chiari I malformation  1769 Chapter 11. Vision, refraction and motility abnormalities  1771 Chapter 12. Obstructive sleep apnea syndrome  1772 Chapter 13. Hearing impairments  1776 Chapter 14. Dentofacial deformities  1777 Chapter 15. Deformities of the extremities  1780 Chapter 16. Cognitive functioning and behavior  1783 Chapter 17. Patients’ and parents’ perspectives  1786 Chapter 18. Psychosocial functioning  1787 Chapter 19. Criteria for the craniofacial center and its team members  1790 Chapter 20. Summary  1794

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