Updated Guideline on Treatment and Management of Craniosynostosis

Abstract

Contents CHAPTER 1. INTRODUCTION The first version of the Dutch guideline for care and treatment of patients with craniosynostosis was established in 2010 and published in 2015.1 The Dutch Society for Plastic and Reconstructive Surgery initiated the revision of this guideline, to update it according to the most recent scientific literature. This second version has been approved by all participating societies in 2020. All chapters from the previous version were revised and new topics on prenatal detection and speech and language development were introduced. REFERENCES 1. Mathijssen IMJ. Guideline for care of patients with the diagnoses of craniosynostosis: Working group on craniosynostosis. J Craniofac Surg 2015:26:1735-1807. CHAPTER 2. METHODOLOGY FOR GUIDELINE DEVELOPMENT Input of Patient Perspective The patient perspective was taken into account by asking the Patient Federation Netherlands for written input on bottlenecks and points for attention in the preparatory phase. They forwarded the request for the submission of bottlenecks to LAPOSA and Stichting Kind en Ziekenhuis (Child and Hospital Foundation). No bottlenecks were submitted. In addition, the chair of LAPOSA had a seat in the working group. During the comment phase, the draft guideline was also presented to the Patient Federation Netherlands, LAPOSA and Foundation Child and Hospital. For information: A focus group meeting had been organized during the development of the guideline in 2010 (see Appendix 1, https://links.lww.com/SCS/B832). This report is still valid. Method Employed by the Working Group Procedure in 2010 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 for several basic questions in additional articles. Care for children with craniosynostosis was introduced in the late 1960 s, and consequently the English literature from those years onwards was included. Searches were performed until 1 December 2009 and articles available as “Epub ahead of publication” at that date were included as well. Regarding all basic questions, patient categories were defined in a uniform way. 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 fasciotomy, hypertelorism. The complete search strategies are available on request. Relevant articles extracted from reference lists of retrieved literature and several relevant publications until 1 November 2009 were included as well. Ongoing research was left out of consideration. Under the headings Summary of the literature / Conclusions only published studies / guidelines are discussed. Case reports and letters were excluded, unless they reported a complication. The selected articles were assessed on methodological quality graded by level of evidence according to the standard classification: see Table 1. After selection, those articles remained that are listed to underpin the various conclusions. The articles are assessed under the heading ‘Summary of the literature’. Next, the scientific evidence was briefly summarized in a ‘Conclusion’. The main literature on which a conclusion is based was mentioned as well, including the level of evidence (see Table 2). Other aspects than scientific evidence may be relevant to making a recommendation as well, such as patient preferences (derived from the results of the focus group sessions or relevant literature on the patient perspective), costs, availability, or organizational aspects. These kinds of aspects, provided they have not been subject of research, were mentioned under the heading ‘Considerations’. The experience and the opinion of the working group members have been key to the other considerations. The ‘Recommendation’ results from the combination of the available evidence and the other considerations. Procedure in 2017/2018 AGREE This guideline has been revised in accordance with the requirements according to the report Medical Specialist Guidelines 2.0 of the Advisory Committee on Guidelines of the Council for Quality (www.kwaliteitskoepel.nl). This report is based on the AGREE II instrument (Appraisal of Guidelines for Research & Evaluation II) (www.agreecollaboration.org), which is an internationally widely accepted instrument, and on ’guidelines for guideline’ for assessing the quality of guidelines (www.cvz.nl). Bottleneck Analysis During the preparator