骨骼发育不良的颅面管理最佳实践指南。
Best practice guidelines in managing the craniofacial aspects of skeletal dysplasia.
机构信息
Victorian Clinical Genetics Services, Murdoch Children's Research Institute, University of Melbourne, Parkville, VIC, 3052, Australia.
Department of Radiology, Seattle Children's Hospital, University of Washington, Seattle, WA, USA.
出版信息
Orphanet J Rare Dis. 2021 Jan 14;16(1):31. doi: 10.1186/s13023-021-01678-8.
BACKGROUND
Recognition and appropriate management of the craniofacial manifestations of patients with skeletal dysplasia are challenging, due to the rarity of these conditions, and dearth of literature to support evidence-based clinical decision making.
METHODS
Using the Delphi method, an international, multi-disciplinary group of individuals, with significant experience in the care of patients with skeletal dysplasia, convened to develop multi-disciplinary, best practice guidelines in the management of craniofacial aspects of these patients.
RESULTS
After a comprehensive literature review, 23 initial statements were generated and critically discussed, with subsequent development of a list of 22 best practice guidelines after a second round voting.
CONCLUSIONS
The guidelines are presented and discussed to provide context and assistance for clinicians in their decision making in this important and challenging component of care for patients with skeletal dysplasia, in order standardize care and improve outcomes.
背景
由于骨骼发育不良患者的这些情况罕见，且缺乏文献支持循证临床决策，因此识别和适当管理其颅面表现具有挑战性。
方法
使用德尔菲法，召集了一组具有骨骼发育不良患者护理经验的国际多学科专家，制定了骨骼发育不良患者颅面管理方面的多学科最佳实践指南。
结果
在全面的文献回顾后，生成了 23 项初始陈述，并进行了批判性讨论，随后在第二轮投票后制定了 22 项最佳实践指南列表。
结论
提出并讨论了这些指南，以便为临床医生在骨骼发育不良患者护理的这一重要且具有挑战性的方面的决策提供背景和帮助，以规范护理并改善结果。
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