在ERNEpiCARE中心探索的过渡:来自调查分析的见解
Valentina De Giorgis1,2, Masa Malenica3, Ludovica Pasca1,2
1Department of Brain and Behaviour Neuroscience, University of Pavia, Pavia, Italy.
Epilepsia open
|August 18, 2025
概括
将年轻患者转移到成人护理方面面临着挑战. 许多中心缺乏正式的协议,多学科团队和早期规划,这影响了罕见的护理连续性.
科学领域:
- 神经学 神经学
- 医疗保健管理的管理
- 患者倡导 患者倡导
背景情况:
- 从儿科到成人医疗保健的过渡对于患有慢性神经系统疾病的年轻人来说至关重要.
- 在这个过渡时期,罕见和复杂的会带来独特的挑战.
- 有效的过渡战略对于维持护理连续性和改善长期结果至关重要.
研究的目的:
- 在EpiCARE网络中探索医疗保健提供者的过渡实践.
- 确定管理罕见和复杂的年轻患者护理过渡的关键障碍和挑战.
- 评估过渡服务的现状,并确定需要改进的领域.
主要方法:
- 在与欧洲患者倡导小组合作开发了一个全面的问卷.
- 该调查对60名EpiCARE会员进行了调查.
- 数据分析的重点是当前的过渡管理,服务可用性,团队参与和时间.
主要成果:
- 只有一半的受访中心报告说,他们有书面的过渡程序.
- 几乎一半的中心缺乏专门的过渡服务,并且在多学科团队参与 (精神科医生,社会工作者) 方面扎.
- 虽然大多数过渡开始于16-18岁,但大多数人认为它应该早些时候 (17岁之前) 开始,以确保连续性.
结论:
- 迫切需要针对罕见和复杂进行量身定制的过渡方案,整合心理社会支持和专家协调.
- 需要标准化的协议和结构化的流程,超越非正式的通信方法.
- 加强提供者,患者和家庭之间的合作对于弥合医疗保健系统的差距和改善生活质量至关重要.
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