A critical review of patient and parent caregiver oriented tools to assess health-related quality of life, activity of daily living and caregiver burden in spinal muscular atrophy

•To date very few QoL measures have been specifically developed for SMA.•There is an increased need to explore the impact of new drugs on QoL.•The existing scales provide useful information not related to functional changes.•The use of these tools may help the discussion on costs of the new therapie...

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Veröffentlicht in:	Neuromuscular disorders : NMD 2019-12, Vol.29 (12), p.940-950
Hauptverfasser:	Messina, Sonia, Frongia, Anna Lia, Antonaci, Laura, Pera, Maria Carmela, Coratti, Giorgia, Pane, Marika, Pasternak, Amy, Civitello, Matthew, Montes, Jacqueline, Mayhew, Anna, Finkel, Richard, Muntoni, Francesco, Mercuri, Eugenio
Format:	Artikel
Sprache:	eng
Schlagworte:	Activity of daily living Care burden, Personalized medicine Health related quality of life Quality of life Spinal muscular atrophy
Online-Zugang:	Volltext
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