Multiple sclerosis has a profound impact on patients' social roles and the well-being of their families. Varying degrees of functional decline typically accompany MS. Because the onset is usually at about 30 years of age, the loss in productivity of people with MS can be substantial. Such functional decline will often interfere with the opportunities for people with MS to perform their customary roles. For example, physical disability — complicated by fatigue, depression and possibly cognitive impairment — contributes to an unemployment rate as high as 70% among people with MS; to replace lost earnings, they frequently collect disability benefits and social welfare. People with MS use more health-care resources than the general population (5). Together with their family members, they may also bear a financial burden related to home and transport modifications and the need for additional personal services.
The socioeconomic impact of MS on the individual is well illustrated by a recent United Kingdom study (6). In this population-based survey of all known patients with MS and their relatives in the county of Hampshire, England, about 53% of those who were employed at the time of diagnosis gave up their jobs, and the standard of living of 37% of patients and their families declined as a direct result of the disease. The ability to continue in gainful employment or to maintain social contacts and leisure activities correlates with the course and severity of the disease and cognitive function. Most carers reported symptoms that clearly related to organic pathologies, anxiety and symptoms of depression. The occurrence of these symptoms was associated with disease severity. The professional careers of 57% of relatives were also adversely affected by the patient's illness.
The economic cost to society is also great (7). A recent economic analysis for the Australian MS Society (Acting Positively) illustrated the impact of the disease, which is considered typical (so far no global economic impact studies have been published). The Australian study found that the burden of the disease is likely to grow. Prevalence is expected to grow by 6.7% in the next five years, faster than population growth attributable to demographic ageing. The total financial costs of MS in 2005 are estimated at more than US$ 450 m (0.07% of GDP) and US$ 29 070 per person with MS, or US$ 23 per Australian per year. Lost productive capacity and the replacement value of informal community care are the two largest cost components (8). The following key economic factors were highlighted by the Australian study.
■ Informal care for people with MS in the community represents 43% of total costs, with an average of 12.3 hours per week of informal care required per person with MS.
■ Aids and modifications for people with physical disability were estimated to represent a further 4.6% of total financial costs.
■ Production losses stemming from reduced work hours, temporary absences, early retirement and premature death are responsible for around 26% of total economic costs.
■ Pharmaceuticals for people with MS, mainly beta-interferons, are estimated to represent 14% of total costs.
■ Nursing home accommodation accounts for around 4.3% of total economic costs. Of the estimated 730 people with MS in (high care) nursing homes 37% are under 65 years of age.
■ Other health-care costs — including hospitalizations, specialist and primary care and allied health expenses — account for 4.4%. Research is 1.9% of health expenditure, below the aver age of 2.4%. Deadweight losses arising from taxation revenue foregone and welfare payment transfers are estimated as US$ 10.5 million or 2.3% of total costs in 2005.
■ The burden of disease — the suffering and premature death experienced by people with MS — is estimated to cost an additional 8968 DALYs (years of healthy life lost), with two thirds attributable to disability and one third to premature death.
■ Last but not least, in Australia MS causes more disability and loss of life than all chronic back pain, slipped discs, machinery accidents, rheumatic heart disease or mental retardation.
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