Multiple Sclerosis – generally referred to as MS and clinically defined as a “demyelinating neurodegenerative disease with central nervous system lesions” – is unfortunately the most widespread cause of neurophysiological breakdown in young adults.
MS commonly strikes people between the ages of 20 and 40, hitting women twice as often as men. According to the Italian Multiple Sclerosis Association, there are 2.5-3 million people with MS worldwide, of whom 600,000 are in Europe, with about 110,000 of those cases in Italy.
In Italy, there are an estimated 3,400 new cases every year (equal to 5-6 new victims per 100,000 people – although the figure is double that in Sardinia, where it is 12 per 100,000). The mortality rate is 0.4 per 100,000.
However, statistics reveal only a fraction of the story.
The course of the disease varies widely from person to person. MS can take several forms, usually falling into four phenotypes, or manifestations of symptoms: relapsing-remitting, secondary progressive, primary progressive, and progressive relapsing. In the case of progressive MS, for example (observed in 15% of cases), the condition is found to worsen irreversibly, ending in total disability.
By contrast, in the event of relapse (85% of cases), acute phases of the illness alternate with partial or even total remission of symptoms. Under all circumstances, of course, the duration and nature of the pathology will mean a significant economic burden, with an average annual cost per Patient of around 45,000 Euros. In Italy alone, that comes to an overall budgetary deficit of about 5 billion Euros every year.
Aside from sums and percentages, however, it is critical never to underestimate the gravity of the affliction. Patients often see their lives crumbling on a daily basis. MS is a profoundly debilitating disease, for which there is, as yet, no cure or even reliable palliative. Given the intractable nature of MS, the only therapeutic approach is twofold: to try to prevent episodes of relapse and to avoid complications. At the same time, medical practitioners seek to maintain as high a level as possible of Patient autonomy and functionality.
The aim of existing therapies, in other words, is to reduce the syndrome’s effects and severity. One of the key factors in MS care is timing, especially during acute attacks, when steroid-based drugs (some form of cortisone, usually methylprednisolone) must be administered to bring down inflammation.
Yet, along with whatever prompt medical remedy caregivers can provide, the ongoing need of support in everyday life is paramount, as for any Patient coping with chronic disease. In the case of MS, such support should ideally be offered directly at home. Not only is personalised home-care the most effective way to improve the Patient’s quality of daily life, it is also an excellent way to guarantee adherence to prescribed medical procedures. Home-care nursing assistance entails three crucial interfaces of real-time support: psychological, dealing with the emotional toll of disability; physical, linked to visible and invisible decline; and educational, providing knowledge about the pathology and its appropriate treatment options. Along with improving the Patient’s circumstances, home-care has the added benefit of significantly reducing the outlay incurred by the National Health Service.
In much of Europe, home-care protocols have already been in place for several years, through a variety of nursing programmes. Patients and their family members are able to receive constant multi-level professional attention, not only with home visits, but also via telephone and online – altogether comprising optimal therapy management. Meanwhile, ISTAT reports that in Italy at the present time, with more than 14 million chronically ill, only three in ten can turn to home-care programmes on offer. Promisingly, however, home-care percentages are on the rise, and the hope is that home-care services will increase many-fold in the near future.
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