Cargando…
Quality of life data for individuals affected by spinal muscular atrophy: a baseline dataset from the Cure SMA Community Update Survey
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 Questionnaire (HUI...
Autores principales: | Belter, Lisa, Cruz, Rosángel, Jarecki, Jill |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7447573/ https://www.ncbi.nlm.nih.gov/pubmed/32838797 http://dx.doi.org/10.1186/s13023-020-01498-2 |
Ejemplares similares
-
The Cure SMA Membership Surveys: Highlights of Key Demographic and Clinical Characteristics of Individuals with Spinal Muscular Atrophy
por: Belter, Lisa, et al.
Publicado: (2021) -
Awareness screening and referral patterns among pediatricians in the United States related to early clinical features of spinal muscular atrophy (SMA)
por: Curry, Mary, et al.
Publicado: (2021) -
Spinal Muscular Atrophy (SMA) Subtype Concordance in Siblings: Findings From the Cure SMA Cohort
por: Jones, Cynthia C., et al.
Publicado: (2020) -
Economic burden of spinal muscular atrophy: an analysis of claims data
por: Belter, Lisa, et al.
Publicado: (2020) -
“I have SMA, SMA doesn’t have me”: a qualitative snapshot into the challenges, successes, and quality of life of adolescents and young adults with SMA
por: Mazzella, Allison, et al.
Publicado: (2021)