Cargando…

Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study

BACKGROUND: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors asso...

Descripción completa

Detalles Bibliográficos
Autores principales:	Yao, Mei, Ma, Ying, Qian, Ruiying, Xia, Yu, Yuan, Changzheng, Bai, Guannan, Mao, Shanshan
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2021
Materias:	Research
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7789582/ https://www.ncbi.nlm.nih.gov/pubmed/33407670 http://dx.doi.org/10.1186/s13023-020-01638-8

Ejemplares similares

The Burden of Spinal Muscular Atrophy on Informal Caregivers
por: Aranda-Reneo, Isaac, et al.
Publicado: (2020)

Burden of Spinal Muscular Atrophy (SMA) on Patients and Caregivers in Canada
por: McMillan, H.J., et al.
Publicado: (2021)

The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs
por: Evkaya Acar, Ayça, et al.
Publicado: (2021)

Anxiety and depression in school-age patients with spinal muscular atrophy: a cross-sectional study
por: Yao, Mei, et al.
Publicado: (2021)

Knowledge of genetic test results among caregivers and individuals with spinal muscular atrophy
por: Belter, Lisa, et al.
Publicado: (2022)

A mixed method study on the impact of living with spinal muscular atrophy in Malaysia from patients’ and caregivers’ perspectives
por: Ch’ng, Gaik Siew, et al.
Publicado: (2022)

Health-Related Quality of Life in Spinal Muscular Atrophy Patients and Their Caregivers—A Prospective, Cross-Sectional, Multi-Center Analysis
por: Wohnrade, Camilla, et al.
Publicado: (2023)

Systematic Literature Review to Identify Utility Values in Patients with Spinal Muscular Atrophy (SMA) and Their Caregivers
por: Sutherland, C. Simone, et al.
Publicado: (2021)

Barriers and facilitating factors of care coordination for children with spinal muscular atrophy type I and II from the caregivers' perspective: an interview study
por: Willems, Jana, et al.
Publicado: (2023)

The Alterations of Gut Microbiome and Lipid Metabolism in Patients with Spinal Muscular Atrophy
por: Feng, Yijie, et al.
Publicado: (2023)

An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA)
por: Boroughs, Deborah S.
Publicado: (2017)

Early experiences of nusinersen for the treatment of spinal muscular atrophy: Results from a large survey of patients and caregivers
por: Chen, Er, et al.
Publicado: (2020)

Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs
por: Brandt, Maja, et al.
Publicado: (2022)

Experiences of caregivers of children with spinal muscular atrophy participating in the expanded access program for nusinersen: a longitudinal qualitative study
por: Kiefer, Petra, et al.
Publicado: (2020)

Spinal muscular atrophy
por: D'Amico, Adele, et al.
Publicado: (2011)

The alteration of left ventricular strain in later-onset spinal muscular atrophy children
por: Cui, Yiqin, et al.
Publicado: (2022)

Validation of a Set of Instruments to Assess Patient- and Caregiver-Oriented Measurements in Spinal Muscular Atrophy: Results of the SMA-TOOL Study
por: Vázquez-Costa, Juan F., et al.
Publicado: (2022)

Evaluating case management for caregivers of children with spinal muscular atrophy type I and II—an exploratory, controlled, mixed-methods trial
por: Willems, Jana, et al.
Publicado: (2023)

Proximal spinal muscular atrophy: current orthopedic perspective
por: Haaker, Gerrit, et al.
Publicado: (2013)

Therapy development for spinal muscular atrophy: perspectives for muscular dystrophies and neurodegenerative disorders
por: Jablonka, Sibylle, et al.
Publicado: (2022)

Choosing Life with Spinal Muscular Atrophy Type 1
por: Lavie, Moran, et al.
Publicado: (2020)

History of development of the life-saving drug “Nusinersen” in spinal muscular atrophy
por: Qiu, Jiaying, et al.
Publicado: (2022)

Corrigendum: The alteration of left ventricular strain in later-onset spinal muscular atrophy children
por: Cui, Yiqin, et al.
Publicado: (2022)

Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers’ perspective: a two-part study
por: Duong, Tina, et al.
Publicado: (2021)

Nusinersen for spinal muscular atrophy
por: Wurster, Claudia D., et al.
Publicado: (2018)

Spinal Muscular Atrophy and Ependymoma
por: Albakr, Aishah, et al.
Publicado: (2017)

Risdiplam for spinal muscular atrophy
Publicado: (2022)

Parents’ perspectives on nusinersen treatment for children with spinal muscular atrophy
por: van Kruijsbergen, Mette, et al.
Publicado: (2021)

Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients
por: Yeo, Crystal J. J., et al.
Publicado: (2022)

Correction to: Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers’ perspective: a two-part study
por: Duong, Tina, et al.
Publicado: (2021)

Caregivers’ Expectations on Possible Functional Changes following Disease-Modifying Treatment in Type II and III Spinal Muscular Atrophy: A Comparative Study
por: Pera, Maria Carmela, et al.
Publicado: (2023)

Genotype-Phenotype Correlation in Chinese Patients with Spinal and Bulbar Muscular Atrophy
por: Ni, Wang, et al.
Publicado: (2015)

Investigations of Curcumin and Resveratrol on Neurite Outgrowth: Perspectives on Spinal Muscular Atrophy
por: Bora-Tatar, Gamze, et al.
Publicado: (2014)

Experience and Perspectives in the US on the Evolving Treatment Landscape in Spinal Muscular Atrophy
por: Ramos-Platt, Leigh, et al.
Publicado: (2022)

Association between serum zinc level and lipid profiles in children with spinal muscular atrophy
por: Long, Qi, et al.
Publicado: (2022)

Modeling Spinal Muscular Atrophy in Drosophila
por: Chang, Howard Chia-Hao, et al.
Publicado: (2008)

Carrier screening for spinal muscular atrophy
por: Prior, Thomas W.
Publicado: (2008)

Androgens in spinal and bulbar muscular atrophy
Publicado: (2012)

Spinal Muscular Atrophy: The Treatment Approved
por: Tabet, Rabih, et al.
Publicado: (2017)

Advances in spinal muscular atrophy therapeutics
por: Parente, Valeria, et al.
Publicado: (2018)

Cannot write session to /tmp/vufind_sessions/sess_ln00jpt96dilnoksh1dma7c69a