‘YourMS’, the first questionnaire to know ‘your multiple sclerosis’

Multiple sclerosis is a chronic, unpredictable and often disabling disease of the central nervous system. It mostly occurs with movement, vision and balance disorders, following a different course from person to person. The causes of the disease, which mainly affects young people, are not known and there is still no definitive cure. Every year in Italy, according to data from the Italian Multiple Sclerosis Association (Aism), 3,600 people are affected by the disease, with a new diagnosis every 3 hours. Of the 130,000 people with multiple sclerosis, 5-10% get sick in childhood and 50% before the age of 40. Multiple sclerosis is the leading cause of neurological disability in young adults after trauma. In the course of multiple sclerosis there may be changes that occur over time. It therefore becomes essential for the patient to intercept changes in symptoms and inform their trusted neurologist as soon as possible. A tool that helps the patient to learn more about their multiple sclerosis is called ‘YourMS’ and is a questionnaire developed with the support of Novartis, which allows the patient and the doctor to understand the evolution of the disease. “The goal of YourMS, in Italian ‘your multiple sclerosis’, is to allow the patient and us neurologists to understand if in the last 6 months there have been changes in the symptoms of the disease, including relapses, and if these are affecting his daily life. Monitoring his condition helps the patient to be aware of it and to inform the doctor more precisely “. So Pietro Iaffaldano, researcher of Neurology at the University of Bari ‘Aldo Moro’, in an interview published on the Aleati per la Salute website ([http://www.alleatiperlasakute,it][http://www.alleatiperlasakute,it]www.alleatiperlasakute, it) the portal dedicated to medical-scientific information created by Novartis. YourMS, explains the neurologist, is a tool “available both in an online version at https://www.yourms.com/#/welcome in various languages, and in a printed version at the multiple sclerosis treatment centers that they can choose. to use the questionnaire. The neurologist who deals with multiple sclerosis can invite the patient to answer a few simple questions, so that he can give his vision of what the disease represents in everyday life “. Among the questions contained in the questionnaire, there are those that refer to the possible impact that the symptoms of multiple sclerosis have had in the last 6 months in these activities: moving, washing, dressing, doing housework, driving, engaging in a hobby, working , have sexual intercourse. There are five possible answers: not at all, a little, moderately, a lot, I can’t do it because of multiple sclerosis. “The questions are direct and specific – underlines Iaffaldano, the neurologist involved in the validation and feasibility assessment phase of the questionnaire for our country – ‘Did you have problems walking?’, ‘Did you have pain?’, ‘For how long? ‘,’ For 6 months? ‘,’ Intermittently? ‘,’ Progressively? ‘,’ Stable? ‘Some relate to the patient’s daily life, including the more intimate aspects of the personal sphere. to an optimal conversation between doctor and patient about multiple sclerosis and the changes observed by the same in recent months, even the smallest detail is essential. It is preferable that the patient completes the questionnaire a few days before the visit in the presence. YourMS focuses on the symptoms , on the disorders and disabilities that the patient has encountered in the last 6 months or that have influenced his existence the most “. For Iaffaldano “it is good for the neurologist to ask the patient to fill in the questionnaire when he deems it necessary, to open a discussion table with the patient on the evolution of his disease and start talking about the progression of the disability”. Not surprisingly, one of the objectives of YourMS is “to reveal the signs of progression of disability, that is the moment in which the patient tends to develop a progressive accumulation of disorders and neurological problems that impact on his daily life. Then the use of the questionnaire is to intercept this event as soon as possible in order to make rapid therapeutic decisions “, concludes the expert. The complete article is available at: https://www.alleatiperlasalute.it/salute-20/yourms-il-questionario-conoscere-meglio-la-sclerosi-multipla.