The Burden of Spinal Muscular Atrophy on Informal Caregivers.

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

SUBMITTER: Aranda-Reneo I 

PROVIDER: S-EPMC7730048 | biostudies-literature | 2020 Dec

REPOSITORIES: biostudies-literature