The burden of spinal muscular atrophy on informal caregivers

authored by: Isaac Aranda-Reneo, Luz María Peña-Longobardo, Juan Oliva-Moreno, Svenja Litzkendorf, Isabelle Durand-Zaleski, Eduardo F. Tizzano, Julio López-Bastida
Abstract: 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 (p < 0.05) of providing more than 10 hours of care per day in comparison with caregivers of patients with type III SMA. The severity of the disease was associated with more time of care and a higher burden on the caregivers.
Organisation(s): Center for Health Economics Research Hannover (CHERH)
External Organisation(s): Universidad de Castilla-La Mancha
AP-HP Assistance Publique - Hopitaux de Paris
Autonomous University of Barcelona (UAB)
Vall d´Hebron Research Institute (VHIR)
Type: Article
Journal: International Journal of Environmental Research and Public Health
Volume: 17
Pages: 1-12
No. of pages: 12
ISSN: 1661-7827
Publication date: 02.12.2020
Publication status: Published
Peer reviewed: Yes
ASJC Scopus subject areas: Pollution, Public Health, Environmental and Occupational Health, Health, Toxicology and Mutagenesis
Sustainable Development Goals: SDG 3 - Good Health and Well-being
Electronic version(s): https://doi.org/10.3390/ijerph17238989 (Access: Open)