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

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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Bibliographic Details
Main Authors: Lisa Belter, Rosángel Cruz, Jill Jarecki
Format: Article
Language:English
Published: BMC 2020-08-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Spinal muscular atrophy
Health utilities index
Work productivity and activity impairment
PROMIS fatigue short form
Patient reported outcome measures
Health related quality of life
Online Access:http://link.springer.com/article/10.1186/s13023-020-01498-2

Internet

http://link.springer.com/article/10.1186/s13023-020-01498-2

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