对于患有罕见骨矿物质疾病的年轻人进行过渡护理:来自ECTS罕见骨病行动小组的共识建议
Corinna Grasemann1, Joline Wernsmann2, Natasha M Appelman-Dijkstra3
1Department of Pediatrics, European Reference Network On Rare Endocrine Conditions (ENDO ERN) Reference Center Katholisches Klinikum Bochum, Ruhr-University Bochum, Bochum, Germany. corinna.grasemann@rub.de.
Calcified tissue international
|May 9, 2025
概括
对于罕见的骨和矿物质疾病 (RBMCs) 的过渡期护理 (TC) 需要标准化. 这项研究制定了关于无护理过渡和RBMC医疗保健患者赋权的共识建议.
科学领域:
- 儿科内分泌学 儿科内分泌学
- 罕见疾病 罕见疾病
- 医疗保健的转型 医疗保健的转型
背景情况:
- 对于患有罕见骨和矿物质疾病 (RBMCs) 的年轻人来说,过渡期护理 (TC) 对于进入成人医疗保健至关重要.
- 目前用于RBMC的TC面临挑战,包括通信缺口,专家短缺和导航困难.
- 标准化的护理是必要的,以防止干扰,并解决医疗和心理社会需求.
研究的目的:
- 制定基于共识的建议,以优化RBMC中的TC.
- 建立最佳实践,以便从儿科到成人护理的无过渡.
- 在RBMC患者的TC过程中促进患者赋权.
主要方法:
- 在2023年9月至2024年4月期间进行的两轮Delphi调查.
- 参与了来自欧洲化组织协会 (ECTS) 的14名欧洲RBMC专家 (临床医生和患者代表).
- 声明通过文献审查和代评分来改进,共识定义为≥70%的同意.
主要成果:
- 在81份最终声明中,有64份在七个领域 (启动,规划,要求,赋权,组织,沟通,服务,资金,临床护理) 达成共识.
- 在一般和RBMC特定的TC建议上达成了强有力的协议.
- 确定的主要优先事项包括结构化的医疗保健提供者协调和以患者为中心的方法,促进自我倡导和自我管理.
结论:
- 德尔菲共识为患有RBMC的年轻人中TC提供了一个结构化的框架.
- 强调多学科护理和患者赋权在治疗罕见骨和矿物质疾病方面的重要性.
- 建议在未来进行研究,以评估这些指南在不同医疗保健系统的可行性和影响.
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