It is well known that a diagnosis of MS brings with it an emotional cost to both those with the disease and their families and carers. It is only recently that the economic cost of having a disease such as MS has been recognised, and that this can place an extra burden on not just those with the disease and their carers, but also the wider community. This appreciation of the cost of MS to the global community has brought economic justification to funding research into treatment (and ultimately a cure) in order to reduce health care and disability support costs.
MS occurs in younger people at a time when they are completing studies and establishing careers, entering relationships and establishing homes and families. It is normally a 'high cost' time in anyone’s life and the extra costs of health care, medications, aids, equipment, uncertain employment status or enforced early retirement are obvious ways in which MS can have an economic and social impact on people with MS and their families. Less tangible costs can include provision of 'informal' care and the buying of services such as domestic assistance.
Predicting costs
There are many characteristics of MS which together can predict the cost of MS. These include the chronic nature of the disease, the investigations used to diagnose and monitor disease progression, and treatments such as disease modifying medications together with the ongoing treatment and management of symptoms. The occurrence of relapses may require acute treatment and hospitalisation, while progressive disability may mean a person with MS requires supportive care and assistive aids and equipment throughout their life.
Informal care
Informal care is a term commonly used in research related to costs or economic factors related to illness. Informal care is that provided by family and friends at no monetary cost, yet it has an enormous economic and social cost. Care provided may include assistance with personal care activities, domestic chores, maintenance and repairs, transport and childcare. The amount of informal care needed has been shown to rise exponentially with the level of disability. The cost of informal care can be calculated in a variety of ways which include: - Replacement valuation: the cost of buying a similar service from a paid care provider
- Opportunity cost: the value of lost wages
- Self-valuation: what carers themselves feel they should be paid.
An Australian study using the replacement model estimated the cost of informal care in MS to be 15 percent of the total cost of MS. This same study, assuming 15,000 people with MS in Australia, estimated total cost to be the equivalent of around $600 million Australian dollars (360 million Euros), excluding nursing home and equivalent formal care costs. Given the enormous cost of MS, it can be appreciated how carers reduce government expenditure considerably and contribute to society in a financial way. This must be recognised, and support and care for carers be acknowledged as an important part of provision of services to people with MS. Besides placing a monetary value on caring, it must also be recognised that there are other significant social costs of unpaid care, as discussed below.
Direct costs
The direct costs of people with MS living in the community include medications, medical services, support services, medical investigations, hospital stays, assistive and medical aids, medical products and home and vehicle alterations.
Indirect costs
The indirect costs of people with MS living in the community include sick leave and absence from work and early retirement. Given the age of people diagnosed with MS, the indirect costs are considerable and have been estimated to be about 40 percent of the total cost of MS.
Burden of disease
Besides placing a monetary value on caring, there are other social costs of MS. Some of the features of the disease such as pain, depression and reduced participation in social and leisure activities result in a lowered quality of life and are an intangible cost of the disease. They are difficult to measure in real financial terms but are considered by many people with MS and their carers as just as important, if not more important, than the actual financial costs associated with the disease.
Relationships
There are other challenges and 'costs' faced by those caring for people with MS. While the focus is predominantly on the person with MS, the needs of carers must be considered as they are also deeply affected. Carers may have reduced or ceased their own paid employment, and have reduced time to pursue their own interests and leisure activities. They may also grieve for the losses and potential losses in regard to plans and dreams about how future life was meant to be for them. Enforced role changes may put added strain on carers as they struggle with additional, unfamiliar tasks and routines, as well as their usual activities and try to balance all competing demands. A partner providing personal assistance may also find it difficult to switch from the caregiver role to that of an intimate partner. The role of carer, therefore, needs to be separated from the individual’s initial prime role, be that of partner, parent, or other family member.
Socioeconomic factors
Recent studies are now focusing on the socioeconomic issues of chronic disease and have found a correlation with reduced income and financial well-being. In a UK study, people with MS reported that their overall standards of living had declined since the diagnosis of MS either due to loss of employment or additional expenditure as a result of disability. An Australian study showed that people with MS often had lower income levels than the general Australian population and were less likely to be in full-time employment. Furthermore, this same study showed that people with MS had 30 percent lower health-related quality of life. Financial problems can add to the overall burden of the disease for carers and families by not only limiting access to treatments and support services for the individual with MS but also by placing strain on the household budgets required to cover utility costs, food, clothing and general living and leisure expenditure of the whole family.
Conclusion
A better understanding of the socioeconomic costs of MS to individuals, families, carers and the community is needed to continue to challenge health, welfare and employment policies and to break the link between the onset of MS and the consequent social and economic disadvantage that is seen to occur. The unpaid care provided by family and friends must be officially recognised and carers need to be valued and supported for the enormous role they play in the care of people with MS.
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