肌萎缩侧索硬化患者支持性照护需求的研究进展

doi:10.3761/j.issn.0254-1769.2026.09.018

中华护理杂志 ›› 2026, Vol. 61 ›› Issue (9): 1277-1283.DOI: 10.3761/j.issn.0254-1769.2026.09.018

肌萎缩侧索硬化患者支持性照护需求的研究进展

蔡卫新¹(), 孙卫格¹, 张冉¹, 陈玮琪², 王毓盈³, 王伊龙²^,^*()

¹ 首都医科大学附属北京天坛医院护理部北京市 100071
² 首都医科大学附属北京天坛医院神经病学中心北京市 100071
³ 首都医科大学护理学院北京市 100069

收稿日期:2025-11-18 出版日期:2026-05-10 发布日期:2026-04-30
*通讯作者: 王伊龙，E-mail：yilong528@aliyun.com
作者简介:蔡卫新：女，硕士，主任护师，E-mail：ttyyhlb@163.com
第一联系人：作者贡献声明
蔡卫新：选题设计、研究指导、论文审阅和修改；孙卫格、张冉、王毓盈：文献检索、文献整理与分析、论文撰写与修改、论文审阅；陈玮琪、王伊龙：核心概念确定、研究指导、论文审阅、基金支持
基金资助:
北京市医药卫生科技促进中心横向科研项目(HX-A-2023052)

Research progress on supportive care needs of patients with amyotrophic lateral sclerosis

CAI Weixin¹(), SUN Weige¹, ZHANG Ran¹, CHEN Weiqi², WANG Yuying³, WANG Yilong²^,^*()

¹ Department of Nursing， Beijing Tiantan Hospital，Capital Medical University， Beijing 100071， China
² Center of Neurology， Beijing Tiantan Hospital，Capital Medical University， Beijing 100071， China
³ School of Nursing， Capital Medical University， Beijing 100071， China

Received:2025-11-18 Online:2026-05-10 Published:2026-04-30
* Corresponding author: WANG Yilong，E-mail：yilong528@aliyun.com
Funding program:
Horizontal Research Project of Beijing Medical and Health Science and Technology Promotion Center(HX-A-2023052)

摘要/Abstract

摘要：

肌萎缩侧索硬化（amyotrophic lateral sclerosis，ALS）是一种罕见的神经系统退行性疾病，尚无有效治愈方法。支持性照护是其全流程管理的核心措施，可提高患者的自护能力、减少负性情绪、降低医疗负担并改善其终末期生活质量。该文从ALS患者支持性照护需求评估工具、需求内容和干预策略3个方面梳理了特异性和非特异性需求评估工具，总结了信息、生理、心理与社会支持和姑息治疗方面的需求，及多学科团队协作、数字化远程干预和辅助设备与技术支持等需求干预策略，以期为国内构建标准化、全程化的ALS支持性照护体系提供参考。

关键词: 肌萎缩侧索硬化, 支持性照护, 姑息疗法, 综述

Abstract:

Amyotrophic lateral sclerosis（ALS） is a rare neurodegenerative disease，which currently receives widespread social attention. There is no effective cure for ALS yet，and supportive care is the core measure of its full-course management，which can significantly improve patients’ self-care ability，reduce negative emotions，lower medical burden，and improve their quality of life in the terminal stage. This study reviews the literature from 3 aspects，namely assessment tools for supportive care needs of ALS patients，needs content，and intervention strategies. It summarizes specific and non-specific tools for needs assessment，needs regarding information，physical，psychological and social support，and palliative care，as well as strategies including multidisciplinary team collaboration，digital remote interventions，and assistive devices and technology support，aiming to provide a reference for constructing a standardized and full-course ALS supportive care system in China..

Key words: Amyotrophic Lateral Sclerosis, Supportive Care, Palliative Therapy, Review

蔡卫新, 孙卫格, 张冉, 陈玮琪, 王毓盈, 王伊龙. 肌萎缩侧索硬化患者支持性照护需求的研究进展[J]. 中华护理杂志, 2026, 61(9): 1277-1283.

CAI Weixin, SUN Weige, ZHANG Ran, CHEN Weiqi, WANG Yuying, WANG Yilong. Research progress on supportive care needs of patients with amyotrophic lateral sclerosis[J]. Chinese Journal of Nursing, 2026, 61(9): 1277-1283.

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肌萎缩侧索硬化患者支持性照护需求的研究进展

Research progress on supportive care needs of patients with amyotrophic lateral sclerosis

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