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Multidisciplinary approach and psychosocial management of spinal muscular atrophy (SMA)
J Ropars1, S Peudenier2, A Genot2
1Department 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.
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.
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