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欧洲患有遗传代谢疾病的儿童和成人的息护理:支持性治疗和护理的不足使用的服务
Anja Lee1, Yngve Thomas Bliksrud2, Michela Onali3
1Norwegian National Advisory Unit on Paediatric Palliative Care, Division of Paediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
Journal of inherited metabolic disease
|October 25, 2025
概括
欧洲的遗传代谢障碍 (IMD) 患者可以获得息护理,但尚未充分利用. 许多IMD医生需要更多关于获得这些重要服务的信息,以获得更好的患者结果.
科学领域:
- 代谢障碍 代谢障碍 代谢障碍
- 抚慰性护理是一种缓解性护理.
- 欧洲医疗保健系统 欧洲医疗保健系统
背景情况:
- 遗传代谢障碍 (IMD) 往往需要缓解护理,因为复杂的,多系统的条件没有治愈的选择.
- 息护理的整合对于生命限制或危及生命的诊断患者来说至关重要,无论年龄如何.
- 欧洲IMD专家中心在组织和获得息治疗方面面临着挑战.
研究的目的:
- 评估欧洲IMD专家中心内的息护理的组织和可访问性.
- 探索IMD医生在提供息护理方面的经验和观点.
- 识别障碍和机会,以改善缓和护理在IMD管理中的整合.
主要方法:
- 欧洲遗传代谢障碍参考网络 (MetabERN) 向103个成员机构分发了一项调查.
- 来自23个欧洲国家的63个机构的92名医生参与了调查.
- 该调查涵盖了息护理组织,可访问性,医生经验和患者转诊模式.
主要成果:
- 大多数国家 (87%) 有国家息护理战略,儿童 (91%) 和成年人 (89%) 都可以获得这些服务.
- 大多数儿科 (86%) 和许多成年 (67%) IMD 医生都使用预先护理计划.
- 尽管有可用性,但大多数医生 (60%) 在过去五年中将20%或更少的已故患者转介给息治疗,这表明使用不足.
结论:
- 大多数欧洲IMD专家中心都提供了息护理服务,但其使用率很低.
- 缓和护理的可用性和IMD患者的实际转诊率之间存在很大的差距.
- 加强IMD医生和患者的信息和教育对于解决误解和改善对息治疗的准入至关重要.
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