Palliative Care in SMA Type 1: A Prospective Multicenter French Study Based on Parents' Reports

Palliative Care in SMA Type 1: A Prospective Multicenter French Study Based on Parents' Reports

Spinal muscular atrophy type 1 (SMA-1) is a severe neurodegenerative disorder, which in the absence of curative treatment, leads to death before 1 year of age in most cases. Caring for these short-lived and severely impaired infants requires palliative management. New drugs (nusinersen) have recentl...

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Bibliographic Details
Main Authors: Marie Hully, Christine Barnerias, Delphine Chabalier, Sophie Le Guen, Virginie Germa, Elodie Deladriere, Catherine Vanhulle, Jean-Marie Cuisset, Brigitte Chabrol, Claude Cances, Carole Vuillerot, Caroline Espil, Michele Mayer, Marie-Christine Nougues, Pascal Sabouraud, Jeremie Lefranc, Vincent Laugel, Francois Rivier, Ulrike Walther Louvier, Julien Durigneux, Sylvia Napuri, Catherine Sarret, Michel Renouil, Alice Masurel, Marcel-Louis Viallard, Isabelle Desguerre
Format: Article
Language:English
Published: Frontiers Media S.A. 2020-02-01
Series:Frontiers in Pediatrics
Subjects:
SMA
palliative care
caregivers
ethics
standard of care
Online Access:https://www.frontiersin.org/article/10.3389/fped.2020.00004/full

Internet

https://www.frontiersin.org/article/10.3389/fped.2020.00004/full

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