脊髓性肌萎缩症（SMA）的多学科方法和心理社会管理。

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

机构信息

Department of Pediatrics, CHU Brest, Brest, France; Neuromuscular center, Brest, France; Laboratoire du Traitement de l'Information Médicale, LaTIM INSERM UMR1101, Brest, France; Groupe d'Interet Scientifique Be A Child, Brest, France.

Department of Pediatrics, CHU Brest, Brest, France; Neuromuscular center, Brest, France.

出版信息

Arch Pediatr. 2020 Dec;27(7S):7S45-7S49. doi: 10.1016/S0929-693X(20)30277-3.

DOI:10.1016/S0929-693X(20)30277-3

PMID:33357598

Abstract

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.

摘要

脊髓性肌萎缩症（SMA）是一种严重的复杂疾病，涉及多个护理领域和专业人员。帮助患者实现最佳生活质量是医疗保健的重要组成部分。多学科管理方法可以改善 SMA 患者的功能、生活质量和寿命。多学科管理应针对延长生存期和新型治疗方法的患者的心理社会挑战进行设计。在这一部分中，我们重点关注 SMA 的多学科管理、多学科会诊、急症管理、心理社会护理和向成年期的过渡。 © 2020 法国儿科学会。由 Elsevier Masson SAS 出版。保留所有权利。