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Multiple sclerosis: why the ‘domiciliation of the disease’ is needed

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Multiple sclerosis: why the ‘domiciliation of the disease’ is needed

A long and complex path that needs to be able to take place on several fronts and not just in the hospital. This is what characterizes Multiple Sclerosis, one of the most evident examples of highly complex chronic disease. A challenge to be won as a team and for which the doctors of the Center for Multiple Sclerosis of the II Neurological Clinic of the University of Campania L. Vanvitelli have been preparing for some time, participating in Biogen’s StayHome project.

A complex pathology

Multiple Sclerosis is a complex and long-lasting disease. Because? “For many reasons”, replies Giacomo Lus, head of the Multiple Sclerosis Center of the II Neurological Clinic of the University of Campania L. Vanvitelli – but above all because he does not have the possibility of a direct and complete therapeutic intervention on the disease mechanisms even if he can be managed in an optimal way up to the net reduction of the impact of the pathology on the patient’s daily life “.

Care settings beyond the hospital

But to treat in such an incisive and continuous way, the hospital or centers for Multiple Sclerosis cannot be the only operative ‘setting’. “It is necessary to expand the activities even at the person’s home. This is the main objective of the StayHome project which has found global consensus from our Multiple Sclerosis Center since the need for broadening the fields of action by the multi-specialist team towards a ‘domiciliation of the disease’ has always been a primary goal. Unfortunately, the burden of managing such a complex disease did not allow the planning and rationalization of interventions in this sense and, therefore, the opportunity of a project like StayHome represented a real opportunity for the operators of the center “.

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Doctors as a coach

But what are the concrete treatments / services that a patient with Multiple Sclerosis can benefit from directly at home? “It is difficult to summarize them in a few lines, but the definition of a patient who one day told me ‘you are my coach!’ Can help. With this expression he wanted to communicate the need to have technical and human support that would act as a guide and answer to the various problems, underlining the need for a daily presence ranging from the interpretation of suspected symptoms, to the physical and psychological management of daily difficulties. , the training of principals (guardians, devices) used to improve symptoms, assistance, including bureaucratic assistance “. In short, many skills for many competent figures.

Territorial health ‘sensor’ of patients’ needs

After an initial phase of acquaintance with the various members of the Centre’s staff, we moved on to a phase of synthesis of the main criticalities that emerged and of the desired needs. “In a few days – explains the neurologist – there will be a plenary meeting between the members of the Center and the operators of the StayHome project to define the possible lines of action and try to understand how, who and at what costs it will be possible to achieve the goal in the most effective way possible “. Then we will move on to action: “Once the roles and methods have been defined – concludes Lus – we will be ready to put into practice this enlargement of the operative setting to experience it, verify its advantages and limits and above all extend it to more and more people affected by Multiple Sclerosis and, indispensable, to local health which represents the true sensor of the needs of all sick people, for now much more theoretical than practical “.

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