The burden of spinal muscular atrophy on informal caregivers

verfasst von

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.

Organisationseinheit(en)

Center for Health Economics Research Hannover (CHERH)

Externe Organisation(en)

Universität Kastilien-La Mancha
AP-HP Assistance Publique - Hopitaux de Paris
Universidad Autónoma de Barcelona (UAB)
Vall d'Hebron Research Institute (VHIR)

Typ

Artikel

Journal

International Journal of Environmental Research and Public Health

Band

17

Seiten

1-12

Anzahl der Seiten

12

ISSN

1661-7827

Publikationsdatum

02.12.2020

Publikationsstatus

Veröffentlicht

Peer-reviewed

Ja

ASJC Scopus Sachgebiete

Umweltverschmutzung, Öffentliche Gesundheit, Umwelt- und Arbeitsmedizin, Gesundheit, Toxikologie und Mutagenese

Ziele für nachhaltige Entwicklung

SDG 3 – Gute Gesundheit und Wohlergehen

Elektronische Version(en)

https://doi.org/10.3390/ijerph17238989 (Zugang: Offen)