DMD患者需求及社会工作介人探讨

[中图分类号]R197 [文献标志码]A [文章编号]1001-8565（2025）06-0790-09

DOI：10.12026/j.issn.1001-8565.2025.06.16

Exploration into the needs social work intervention patients with Duchenne Muscular Dystrophy

MENGYexiang，CUIYu，WANGWenjing，YANJuan （ ， ， O3oool，）

Abstract： Duchenne Muscular Dystrophy （DMD） is an X-linked recessive inherited myopathy caused by a pathogenic variant the amyotrophic protein gene.Currntly，DMD patients have needs for treatment， education， social integration at diferent stages the disease.Faced with the multiple needs DMD patients，based on the pressonal value ethics social work，the integrative orientation social work， the multiple roles social workers，social workers can build a comprehensive service system centred on DMD patients provide multiple services.Specifically，social work intervention paths can enhance the health well-being DMD patients improve their quality lifeby providing various services such as inhospital out--hospital health management， psychological support，resource links，empowerment， construction social support networks， science popularization， policy advocacy.

Keywords： Duchenne Muscular Dystrophy；patient need; social work； social worker; social service

2018年国家五部门联合发布中国《第一批罕见病目录》，进行性肌营养不良作为第98项被纳入其中，其中代表性疾病为Duchenne型肌营养不良症（DuchenneMuscularDystrophy，DMD）和Becker型肌营养不良症（BeckerMuscularDystrophy，BMD）。（剩余15844字）