Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey

Abstract Background Individuals and/or caregivers of individuals affected by spinal muscular atrophy (SMA) completed the 2019 Cure SMA Community Update Survey, online, assessing health-related quality of life (HRQoL), loss of work productivity, and fatigue using the Health Utilities Index Questionna...

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Autori principali:	Lisa Belter, Rosángel Cruz, Jill Jarecki
Natura:	Artigo
Lingua:	Inglês
Pubblicazione:	BMC 2020-08-01
Serie:	Orphanet Journal of Rare Diseases
Soggetti:	Spinal muscular atrophy Health utilities index Work productivity and activity impairment PROMIS fatigue short form Patient reported outcome measures Health related quality of life
Accesso online:	http://link.springer.com/article/10.1186/s13023-020-01498-2
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