基于多点执业对罕见病肝豆状核变性的临床教学方式及人文关怀的探讨

李玲玲, 王晓平

神经病学与神经康复学杂志 ›› 2026, Vol. 22 ›› Issue (3) : 20260009.

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神经病学与神经康复学杂志 ›› 2026, Vol. 22 ›› Issue (3) : 20260009. DOI: 10.12022/jnnr.2025-0236
神经病学

基于多点执业对罕见病肝豆状核变性的临床教学方式及人文关怀的探讨

  • 李玲玲,王晓平
作者信息 +

Exploration of clinical teaching methods and humanistic care for rare disease hepatolenticular degeneration based on multi-site practice

  • LI Lingling, WANG Xiaoping
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文章历史 +

摘要

肝豆状核变性(又称威尔逊病,Wilson’s disease)作为一种罕见的遗传性铜代谢障碍疾病,其临床诊疗具有复杂性和多学科性特点,并且患者的长期管理需要兼顾生理和心理需求。随着医师多点执业政策的推进,医疗资源流动为肝豆状核变性的临床教学带来了新的机遇与挑战。本文结合作者本人的多点执业实践,分析了多点执业模式对肝豆状核变性临床教学的革新,梳理了临床教学与人文关怀融合的现状与难点,在此基础上提出构建跨机构“教学-关怀”整合平台、开发标准化教学模块等优化策略,并进一步探讨了如何通过多点执业模式整合现有资源,实现临床教学质量提升与患者人文关怀强化的协同发展,以期为罕见病的诊疗教学及患者临床管理提供参考依据。

Abstract

Hepatolenticular degeneration (also known as Wilson's disease), as a rare inherited disorder of copper metabolism, presents complexities and multidisciplinary challenges in clinical diagnosis and treatment, requiring long-term patient management that addresses both physiological and psychological needs. With the advancement of the multi-site practice policy, the flow of medical resources has introduced new opportunities and challenges for the clinical education of hepatolenticular degeneration. Based on the author's personal experience with multi-site practice, this paper analyzes the innovation of multi-site practice on the clinical teaching of hepatolenticular degeneration, reviews the current status and difficulties of the integration of clinical teaching and humanistic care, and proposes optimization strategies such as establishing a cross-institutional "teaching-care" integration platform and developing standardized teaching modules. It further explores how to integrate existing resources through multi-site practice to achieve synergistic development in improving clinical teaching quality and enhancing humanistic care for patients, aiming to provide a reference for the clinical teaching and patient management of rare diseases.

关键词

多点执业 / 肝豆状核变性(威尔逊病) / 临床教学 / 人文关怀 / 罕见病

Key words

Multi-site practice / Hepatolenticular degeneration (Wilson's disease) / Clinical teaching / Humanistic care / Rare disease

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导出引用
李玲玲, 王晓平. 基于多点执业对罕见病肝豆状核变性的临床教学方式及人文关怀的探讨[J]. 神经病学与神经康复学杂志. 2026, 22(3): 20260009 https://doi.org/10.12022/jnnr.2025-0236
LI Lingling, WANG Xiaoping. Exploration of clinical teaching methods and humanistic care for rare disease hepatolenticular degeneration based on multi-site practice[J]. Journal of Neurology and Neurorehabilitation. 2026, 22(3): 20260009 https://doi.org/10.12022/jnnr.2025-0236

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