(ANSA) – ROME, MAY 04 – One case for every 5 thousand people. This is the incidence in Europe of myasthenia gravis, a rare autoimmune disease of the neuromuscular junctions. The quality of life of people affected by this pathology is inevitably conditioned by the costs to be incurred for treatment, by the difficulties in carrying on the professional path and by the constant help of caregivers.
To accurately assess the impact of the disease on patients’ daily lives, the Center for Applied Economic Research in Healthcare-Crea Sanità and Rare Disease Observatory-Omar are launching an online questionnaire: a survey on quality of life and direct costs, health and non-medical, and indirect of pathology in Italy. It will be possible to respond to the survey, carried out with the contribution of clinicians and patient associations of the Myasthenia Gravis Alliance and in collaboration with UCB Pharma SpA: next June 30th: based on the responses, a document will be drawn up which will help identify some solutions for improve the daily life of those who experience this pathology.
To participate in the survey, just access the link and answer the questions. Among the questions there are those on the number of visits and checks carried out in a year and on the expense to be faced, on the psychological aspects linked to the pathology, such as anxiety for the future, depression, difficulty in leading a relational and social life. The answers provided are totally anonymous – at the end of the questionnaire, consent to the processing of data will be requested, which in any case does not contain sensitive information: the entire compilation, which can be done from a smartphone, tablet or computer, takes about 25 minutes. (HANDLE).
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