软骨发育不良是骨骼发育不良的最常见形式。除了改变生长,儿童和青少年软骨发育不全可能会出现医疗并发症,与他人不同的发展和功能,需要社会心理支持。国际,已经为软骨发育不全的管理制定了欧洲和美国共识指南。此处介绍的澳大利亚重点指南旨在补充现有指南。它们旨在为家庭和临床医生提供核心护理建议,巩固治疗软骨发育不全儿童的关键资源,促进专家之间的沟通,当地团队和家庭,支持提供高质量的护理,无论环境和地理位置如何。准则包括一系列共识声明,使用改进的Delphi过程开发。这些陈述得到了使用国家健康和医学研究委员会的证据水平标准及其建议评估的最佳可用证据的支持。开发和评估(等级)。此外,提出了针对年龄的指南,重点关注增长的关键领域,medical,发展,社会心理和社区。该指南旨在供卫生专业人员,患有软骨发育不全的儿童和年轻人及其居住在澳大利亚的家人使用。
Achondroplasia is the most common form of skeletal dysplasia. In addition to altered growth, children and young people with achondroplasia may experience medical complications, develop and function differently to others and require psychosocial support. International, European and American
consensus guidelines have been developed for the management of
achondroplasia. The Australian focused
guidelines presented here are designed to complement those existing
guidelines. They aim to provide core care recommendations for families and clinicians, consolidate key resources for the management of children with achondroplasia, facilitate communication between specialist, local teams and families and support delivery of high-quality care regardless of setting and geographical location. The
guidelines include a series of
consensus statements, developed using a modified Delphi process. These statements are supported by the best available evidence assessed using the National Health and Medicine Research Council\'s criteria for Level of Evidence and their Grading of Recommendations Assessment, Development and Evaluation (GRADE). Additionally, age specific guides are presented that focus on the key domains of growth, medical, development, psychosocial and community. The
guidelines are intended for use by health professionals and children and young people with
achondroplasia and their families living in Australia.