英国共识指导方针,用于多学科的护理的儿童和青少年与骨质疏松症:一个修改的德尔菲过程
Toby P Candler1,2, Kate Ali3, Emma Bewick4
1Bristol Royal Hospital for Children, Bristol, England, UK.
Archives of disease in childhood
|January 21, 2026
概括
新的英国临床指导方针为患有无骨质疏松症 (ACH) 的儿童提供了全面的护理建议,解决了终身医疗和心理社会需求. 这些指导方针确保协调,预期的护理量身定制为英国的医疗保健系统.
科学领域:
- 遗传学和罕见疾病
- 儿科内分泌学 儿科内分泌学
- 临床实践指南 临床实践指南
背景情况:
- 骨髓缺血症 (ACH) 是最常见的骨缺血症,是由FGFR3基因突变引起的.
- 患有ACH的儿童面临着重要的终身医疗,功能和心理社会挑战.
- 此前,英国缺乏针对其医疗保健系统的全国临床护理建议.
研究的目的:
- 制定针对英国的,多学科的临床建议,用于治疗患有骨质疏松症的儿童和青少年 (CYP).
- 为参与ACH护理的医疗保健专业人员提供特定年龄的指导.
- 在英国建立一个协调和预期护理的框架.
主要方法:
- 英国Achondroplasia网络倡议涉及利益相关者绘制和文献审查.
- 采用了经过修改的Delphi流程,使用了25名多学科专家.
- 共识被定义为≥80%的协议,有两轮投票和一次面对面的会议.
主要成果:
- 该指南包括24个基于共识的陈述,涵盖婴儿到青少年时期.
- 建议涉及医疗管理,心理社会支持,教育规划和过渡到成人护理.
- 获得了高水平的专家协议 (≥80%,21/24在第二轮达到100%).
结论:
- 这些是英国针对CYP的ACH护理的第一个专门的多学科建议.
- 这些指导方针与国际最佳实践保持一致,并为英国医疗保健系统量身定制.
- 它们旨在提高健康和心理社会结果,促进独立性,并标准化护理.
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