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Guideline for Care of Patients With the Diagnoses of Craniosynostosis: Working Group on Craniosynostosis
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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: [email protected] 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 1. GENERAL INTRODUCTION Objective This guideline provides recommendations for medical practice on suspicion of craniosynostosis and after confirmation of this diagnosis. It is based on the results of scientific research and subsequent forming of opinion by a multidisciplinary working group, composed of representatives of the medical specialties involved in the treatment of craniosynostosis, related professional disciplines, and other parties involved. The wishes of parents and health professionals regarding the organization of health care for craniosynostosis were inventoried. The guideline document addresses the important issues for the support of parents with a child with a craniosynostosis. Method Employed by the Working Group The content of this guideline is based on evidence from published scientific research. Relevant articles were identified using systematic searches in Medline, Embase, and the Cochrane Library. Existing guidelines were specifically searched for in online accessible international and national guideline clearinghouses. Searches were limited to the Dutch, English, and French languages. In addition, articles were extracted from reference lists of relevant literature. This resulted in additional articles for several basic questions. Care for children with craniosynostosis was introduced in the late 1960s and consequently the English literature from those years onwards was included. Searches were performed until December 1, 2009 and articles available as “Epub ahead of publication” at that date were included as well. The following search terms were used: craniofacial, craniosynostosis combined with: genetics, hydrocephalus, Chiari, cerebral pressure, otitis, hearing, vision, psychology, anesthesia, complications, infection, development, growth, maxilla, mandible, distraction, osteotomy, Fort, midface, RED, halo, monobloc, facial bipartition, median faciotomy, and hypertelorism. Relevant articles extracted from reference lists of retrieved literature and several relevant publicati
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“Early diagnosis enables appropriate planning and intervention, also to support the normal growth of the skull and brain in the best possible way, but also as the condition can be treated minimally invasively in the first months of life with reduced mortality [15, 88].”
From Developments in diagnostic and surgical techniques in children with sagittal suture craniosynostosis: a systematic review spanning the last 30 years (2025) · cites this paper as [88]
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“Early diagnosis enables appropriate planning and intervention, also to support the normal growth of the skull and brain in the best possible way, but also as the condition can be treated minimally invasively in the first months of life with reduced mortality [15, 88].”
From Developments in diagnostic and surgical techniques in children with sagittal suture craniosynostosis: a systematic review spanning the last 30 years (2025) · cites this paper as [88]
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Metadata
- Authors
- Mathijssen, I. M. J.
- Corresponding author
- Mathijssen, Irene M.J.
- Venue
- Journal of Craniofacial Surgery
- Published
- 2015-09
- Volume
- 26
- Issue
- 6
- Pages
- 1735-1807
- ISSN
- 1049-2275 (ISSN-L)
- PMC
- PMC4568904
- OpenAlex
- W2409179428
- Cited by
- 232
- References
- 453
- Citations by year
- 2026: 16 · 2025: 13 · 2024: 28 · 2023: 27 · 2022: 31 · 2021: 38 · 2020: 24 · 2019: 19 · 2018: 14 · 2017: 8 · 2016: 13
- FWCI
- 8.02
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- cc-by-nc-nd
- Locations
- Journal of Craniofacial Surgery (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion, other-oa)
- RePub (Erasmus University Rotterdam) (submittedVersion, other-oa)
- RePub (Erasmus University Rotterdam) (submittedVersion)
- Topics
- Health Sciences › Medicine › Surgery › Craniofacial Disorders and Treatments
- Health Sciences › Medicine › Surgery › Reconstructive Facial Surgery Techniques
- Health Sciences › Medicine › Surgery › Pectus Deformity Diagnosis and Treatment
- Keywords
- craniosynostosis, nonsyndromic craniosynostosis, syndromic craniosynostosis, multidisciplinary care, surgical treatment, perioperative care, cranial vault expansion, craniofacial deformities, intracranial hypertension, hydrocephalus, psychosocial impact, parental support
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