Patient and parent oriented tools to assess health-related quality of life, activity of daily living and caregiver burden in SMA. Rome, 13 July 2019

•To explore the different PROMS currently or previously used in SMA.•To define the domains explored by each tool in relation to age and SMA type.•To report the relevant aspects of the disease in SMA patient.•To define a roadmap of possible tools to be used in different settings.•To define areas wher...

Ausführliche Beschreibung

Gespeichert in:

Bibliographische Detailangaben
Veröffentlicht in:	Neuromuscular disorders : NMD 2020-05, Vol.30 (5), p.431-436
Hauptverfasser:	Mercuri, Eugenio, Messina, Sonia, Montes, Jacqueline, Muntoni, Francesco, Sansone, Valeria A., Antonaci, Laura, Civitello, Matt, Coratti, Giorgia, Lemus, Mencia de, Sanctis, Roberto de, Avexis, Marcus Droege, Duong, Tina, Finkel, Richard, Frongia, Anna Lia, Roche, Ksenija Gorni, Heatwole, Chad, Gusset, Nicole, Henricson, Erik, Mayhew, Anna, Marchesi, Chiara, Pasternak, Amy, Pechmann, Astrid, Pera, Maria Carmela, Rubino, Ivana, Sansone, Valeria, Schroth, Mary, Trundell, Dylan, Straub, Volker
Format:	Artikel
Sprache:	eng
Schlagworte:	Activity of daily living Caregiver burden Health related quality of life Quality of life Spinal muscular atrophy
Online-Zugang:	Volltext
Tags:	Tag hinzufügen Keine Tags, Fügen Sie den ersten Tag hinzu!

Beschreibung
Zusammenfassung:	•To explore the different PROMS currently or previously used in SMA.•To define the domains explored by each tool in relation to age and SMA type.•To report the relevant aspects of the disease in SMA patient.•To define a roadmap of possible tools to be used in different settings.•To define areas where further research is needed.
ISSN:	0960-8966 1873-2364
DOI:	10.1016/j.nmd.2020.02.019