SMA is the second most common neuromuscular disease in children. It causes paralysis of very varying age and severity causing respiratory and orthopedic complications. There are four types (from I to IV) depending on the age of onset and the best motor function achieved. SMA types I and II and, to a lesser degree, type III, are the cause of significant disability and very often high dependency. The caregiving load is particularly important, a fortiori if the person requires ventilation assistance.
In an article published in December 2020, European health economists associated with specialists in SMA looked at the burden on caregivers caring for people with SMA on a daily basis in four countries (27 patients in Spain, 16 in France, 14 in the United Kingdom and 11 in Germany). The survey was conducted in the form of questionnaires specifying the type of SMA, the degree of dependence, the terms of the help provided and the profile of the caregivers. It then focused on the analysis of the time spent by so-called “informal” caregivers, that is to say in practice unpaid (family or not). As expected, the burden on these caregivers can be very significant, up to 10 hours and much more for the most severe cases of SMA. The repercussions on their personal lives are also highlighted.