The Burden of Spinal Muscular Atrophy on Informal Caregivers

Isaac Aranda-Reneo, Luz María Peña-Longobardo, Juan Oliva (), Svenja Litzkendorf, Isabelle Durand-Zaleski, Eduardo F. Tizzano and Julio López-Bastida
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Isaac Aranda-Reneo: Department of Economic Analysis and Finances, Faculty of Social Sciences, University of Castilla-La Mancha, 45600 Talavera de la Reina, Spain
Luz María Peña-Longobardo: Department of Economic Analysis and Finances, Faculty of Law and Social Sciences, University of Castilla-La Mancha, 45071 Toledo, Spain
Svenja Litzkendorf: Health Economics Department, Center for Health Economics Research Hannover, 30159 Hannover, Germany
Isabelle Durand-Zaleski: Department of Public Health, Hospital Albert Chenevier, 94000 Paris, France
Eduardo F. Tizzano: Department of Clinical and Molecular Genetics Hospital Vall d’Hebron, and CIBERER, 08035 Barcelona, Spain
Julio López-Bastida: Department of Nursing, Faculty of Health Sciences, University of Castilla-La Mancha, 45600 Talavera de la Reina, Spain

IJERPH, 2020, vol. 17, issue 23, 1-12

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 h 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.

Keywords: spinal muscular atrophy; informal care; burden of disease (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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