Multidisciplinary approach and psychosocial management of spinal muscular atrophy (SMA)

被引：0

作者：

Ropars, J. ^{[1
,2
,3
,4
]}

Peudenier, S. ^{[1
,2
]}

Genot, A. ^{[1
,2
]}

Barnerias, C. ^{[5
,6
]}

Espil, C. ^{[7
,8
]}

机构：

[1] CHU Brest, Dept Pediat, Brest, France

[2] Neuromuscular Ctr, Brest, France

[3] InTIM INSERM UMR1101, Lab Traitement Informat Med, Brest, France

[4] Grp Interet Sci Be Child, Brest, France

[5] Necker Enfants Malad, Dept Pediat Neurol, Paris, France

[6] Neuromuscular Ctr, Paris, France

[7] CHU Bordeaux, Dept Pediat Neurol, Bordeaux, France

[8] Neuromuscular Ctr, Bordeaux, France

来源：

ARCHIVES DE PEDIATRIE | 2020年 / 27卷 / 07期

关键词：

Spinal Muscular Atrophy; Multidisciplinary management; Transition; LONG-TERM SURVIVAL; CONSENSUS STATEMENT; HEALTH-CARE; CHILDREN; DUCHENNE; DYSTROPHY; DIAGNOSIS; ADOLESCENTS; TRANSITIONS; CHALLENGES;

D O I：

暂无

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

Spinal Muscular Atrophy (SMA) is a severe complex disorder involving different aspects of care and professionals. Helping individuals to achieve their best possible quality of life is an essential part of health care. A multidisciplinary approach to management across the range of actors improves the function, quality of life and longevity of patients with SMA. Multidisciplinary management should be designed to address the psychosocial challenges of patients with prolonged survival and novel therapies. In this part, we focus on multidisciplinary management of SMA, pluridisciplinary consultations, emergency management, psychosocial care and transitions to adulthood. (C) 2020 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.

引用

页码：45 / 49

页数：5

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