Economic Impact of Multiple Sclerosis in 2010: Australian MS Longitudinal Study

Multiple sclerosis (MS) is a progressive, chronic disease of the central nervous system (brain and spinal cord). It is the most frequent neurological disease in young and middle-aged adults in developed countries and has a lifelong impact. Because MS involves multiple areas of the central nervous system, it is characterised by a variable and complex range of symptoms, including visual disturbance, fatigue, pain, reduced mobility and coordination, cognitive impairment, and mood changes. Average age at onset is between 20 and 40, and 75% of people with MS are women. Thus, MS tends to strike people in their most productive years. It affects ability to fulfil expected life roles at a stage when careers, relationships, and adult life in the community are consolidating, with resulting impact on work, family, and social life. Thus, MS may result in profound biographical disruption. The typical course of MS is initially relapsing-remitting, with symptoms partially or completely disappearing during remissions. However, after about 10 years, the majority of people enter a secondary progressive phase and disability gradually accumulates. For a smaller group, the disease course is primary progressive, with ongoing worsening of the initial presentation. Many of these people with MS develop other chronic conditions in the course of the disease. One of the key aims of treatment for MS is to delay the progression of the disease to more permanent disability. Therefore the clinical and economic benefits will be realised at a future time. Clinical trials are frequently too short in duration to capture the economic benefits of treatment and therefore data are required on the costs incurred by people experiencing the condition in order to predict the impact of new interventions. The objective of this study is to estimate the cost of MS in Australia from an individual and societal perspective and to assess how MS affects the quality of life using data from the Australian MS Longitudinal Study (AMSLS). The AMSLS is an ongoing research project that includes around 3,100 volunteers with MS from all States and Territories of Australia. The survey captured information that could be used to determine direct costs such as pharmaceutical, medical, nursing, community and private services, hospitalisations, home and car alterations, special equipment and informal care, and indirect costs such as sickness leave and early retirement. Thus, availability of this large and comprehensive data set provides a unique opportunity to determine the societal cost of MS in Australia.