Physician driven variation in the care of children with spinal muscular atrophy type 1

Summary Background Increasing numbers of families are requesting active supportive management for their child with spinal muscular atrophy type 1 (SMA1), leading to longer survival and greater prevalence of affected children. Strong opinions exist among physicians for and against the provision of ca...

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Veröffentlicht in:	Pediatric pulmonology 2017-05, Vol.52 (5), p.662-668
Hauptverfasser:	Oskoui, Maryam, Ng, Pamela, Liben, Stephen, Zielinski, David
Format:	Artikel
Sprache:	eng
Schlagworte:	Canada Child Child, Preschool Cross-Sectional Studies Decision Making Female Health Care Surveys Humans Male neuromuscular diseases Noninvasive Ventilation Parents Patient Participation quality of life Respiratory Insufficiency - etiology Respiratory Insufficiency - therapy respiratory support Spinal Muscular Atrophies of Childhood - complications Spinal Muscular Atrophies of Childhood - therapy spinal muscular atrophy Tracheostomy
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