The Treatment experience, burden, and unmet needs (TRIBUNE) study – measuring the socioeconomic consequences of Multiple Sclerosis

Multiple sclerosis is a disease of the central nervous system that is characterized by inflammation, demyelination and axon degeneration involving multiple functional sub­ systems more or less simultaneously and/or progressively.1 It is the main non­traumatic neurological condition in young adults2, with a clinical onset usually between the age of 20 and 40 years. It is common among individuals affected by the disease to start seeking medical advice for transient or persistent visual disturbances, gait disorders, sensory and motor deficits, and other more subtle symptoms, such as bowel and bladder dysfunction, sexual problems, mood dis­ turbances, and attention deficits. Fatigue interferes with the daily activities in up to 80% of multiple sclerosis patients, regardless of the degree of their disability. The disease imposes a significant burden on the affected individuals and their families. Since it is most frequently diagnosed in young adults, it interferes with the most pro­ ductive phase of the life of an individual, which is when relevant decisions are taken with regards to life challenges, such as professional career, family planning and manage­ ment, all kinds of life responsibilities and social status. Its diagnosis, not only significantly disrupts the affected indi­ vidual, but has also an impact on the family members and all those whose lives interact with the affected individual. Multiple sclerosis ‘joins’ the family, interfering with the family’s ‘rhythm’, with the members’ spoken and unspoken tasks, requiring shifts in roles and thus, as an ‘unwanted guest’, increasing stress in everyday living. It is because multiple sclerosis is a chronic usually progressive and potentially highly disabling disorder with an unpredictable course and clinical presentation that leaves individuals with considerable concern for their future. The cause of multiple sclerosis is unknown and there­ fore no interventions for primary prevention can be imple­ mented in the population at large. Currently, scientists are oriented towards possible lifestyle conditions that interact with genetic factors during the individuals’ development stages (e.g., as fetus, or during childhood and adolescence) in order to determine the ‘multiple sclerosis trait’3 and the overt disease. Among such conditions, active and passive cigarette smoking, low sun exposure, and change in epide­ miological patterns of childhood infections (e.g., Epstein Barr virus and infectious mononucleosis, parasitoses) are today’s research focus with regards to their main effects and/or possible interactions with the disease onset. The incidence of multiple sclerosis is increasing over time in most populations studied.4 The clinical phenotype trends lean towards the conventional Western type of the disease, with the female population being at increasingly higher risk compared to males.5 This favours the hypothesis that the lifestyle changes are connected with the higher disease frequency, which leads us to the conclusion that multiple sclerosis will affect an increasing number of indi­ viduals over time. Currently, multiple sclerosis affects around 540,000 people in Europe, as indicated by a recent study conducted by the European Brain Council.6 The number of individuals affected by multiple sclerosis in Europe may be lower com­ pared to other chronic neurological conditions (e.g. stroke, dementia, Parkinson’s disease)6, however, the disease’s socioeconomic burden is equally significant or higher in many cases, given that it affects mainly young adults and has an impact on their ability to work, as well as increases overtime the need for support from families, friends, and society as a whole. The total cost of multiple sclerosis in Europe in 2010 was estimated at € 14.6 billion, constituting 1.8% of the total economic costs for brain disorders.6;7 Multiple sclerosis, as other chronic conditions, consti­ tutes a challenge for the developing and developed coun­ tries since the economic burden on healthcare systems and on society increases over time, given the increasing num­ ber of new cases of individuals affected by the disease4, as well as the progression of disability and the disease exac­ erbations among people already diagnosed with multiple sclerosis.8 Therefore, implementing innovative solutions in order to minimize the impact the disease has on indi­ viduals and healthcare systems is as important as manag­ ing multiple sclerosis patients efficiently using available disease modifying therapies, helping them to improve their everyday living conditions and their overall quality of life. The contributions published in this special issue9 make available new evidence on the social burden and quality of life of patients with multiple sclerosis in five major European countries. The annual cost per patient attributable to the disease ranges from € 20,738 to € 29,400. These esti­ mates, obtained from a sample mainly made by mild and moderate patients treated with disease modifying drugs, confirm that multiple sclerosis creates a major burden on patients, their families and society at large, especially if it is The Treatment experience, burden, and unmet needs (TRIBUNE) study – measuring the socioeconomic consequences of Multiple Sclerosis 447262 MSJ0010.1177/1352458512447262EditorialMultiple Sclerosis Journal 2012