The Burden of Spinal Muscular Atrophy on Informal Caregivers.
burden of disease
informal care
spinal muscular atrophy
Journal
International journal of environmental research and public health
ISSN: 1660-4601
Titre abrégé: Int J Environ Res Public Health
Pays: Switzerland
ID NLM: 101238455
Informations de publication
Date de publication:
02 12 2020
02 12 2020
Historique:
received:
23
10
2020
revised:
26
11
2020
accepted:
28
11
2020
entrez:
5
12
2020
pubmed:
6
12
2020
medline:
5
2
2021
Statut:
epublish
Résumé
Spinal muscular atrophy (SMA) is one of the most common severe hereditary diseases of infancy and early childhood. The progression of this illness causes a high degree of disability; hence, a significant burden is experienced by individuals with this disease and their families. We analyzed the time taken to care for patients suffering from SMA in European countries and the burden on their informal caregivers. We designed a cross-sectional study recording data from France, Germany, Spain and the United Kingdom. The primary caregivers completed a self-administered questionnaire that included questions about the time of care, The Zarit Burden Interview, type of SMA and socio-demographic characteristics. Multivariate analyses were used to study the associations between the type of SMA, time of care and burden supported by informal caregivers. The caregivers provided 10.0 h (SD = 6.7) per day of care (the principal caregivers provided 6.9 h, SD = 4.6). The informal caregivers of patients with type I SMA had a 36.3 point higher likelihood (
Identifiants
pubmed: 33276656
pii: ijerph17238989
doi: 10.3390/ijerph17238989
pmc: PMC7730048
pii:
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
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