DMD患者需求及社會工作介人探討

[中圖分類號]R197 [文獻標志碼]A [文章編號]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年國家五部門聯(lián)合發(fā)布中國《第一批罕見病目錄》，進行性肌營養(yǎng)不良作為第98項被納入其中，其中代表性疾病為Duchenne型肌營養(yǎng)不良癥（DuchenneMuscularDystrophy，DMD）和Becker型肌營養(yǎng)不良癥（BeckerMuscularDystrophy，BMD）。（剩余15844字）