脊髓性肌萎缩
形状记忆合金*
社会心理的
多学科方法
医学
康复
物理疗法
物理医学与康复
脊髓损伤
病理
疾病
精神科
计算机科学
算法
社会科学
社会学
作者
Juliette Ropars,Sylviane Peudenier,A. Genot,Christine Barnérias,Caroline Espil
标识
DOI:10.1016/s0929-693x(20)30277-3
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. © 2020 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.
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