The Australian MS Longitudinal Study

The Australian MS Longitudinal Study (AMSLS), also known as the MS Life Study, is an ongoing research project designed to provide data of practical use for improving the lives of Australians living with MS. The AMSLS is an inter-disciplinary program that gives people with MS a voice in matters of importance to them, through scientific surveys designed by professional researchers in appropriate fields.

In the past year, four areas of investigation have been pursued:

1. Economic impact of MS with an emphasis on the reasons for high loss of employment by Australians with MS
2. Patterns of prescription medication use by Australians with MS;
3. Quality of life in relation to self-management by people with MS; and

The AMSLS was also used by MS Australia to collect data on:

1. Air-conditioning needs of people with MS who frequently require medical cooling

Progress on each of these topics is described below.

Quantitative and qualitative survey methodology is used for AMSLS research, including self-report data from people with MS and data from treating neurologists. Participants’ privacy is strictly protected. Design and analysis of surveys is performed by teams of professionals who are familiar with the research topic and with survey methodology, including statistical analysis.

Recruits
As of April 2010, AMSLS has around 3,100 volunteers with MS from all States and Territories of Australia.

• Information Sheet
• Participants Consent Form

Current recruits represent a large sample of the estimated 20,000 Australians with MS. The privacy of AMSLS volunteers is strictly preserved through use of ID numbers instead of names during data collection, and by keeping no personally identifying data on any computer connected to the Internet. (Hence, the names and addresses of AMSLS volunteers cannot be “hacked”).

The project has received independent ethical approval to proceed from the ACT Health Human Research Ethics Committee, Canberra, which is a National Health and Medical Research Council-constituted ethics committee.

Any Australian resident diagnosed with MS after June 2002 is eligible to join the Study

1. Economic impact of MS with an emphasis on the reasons for high loss of employment by Australians with MS

The AMSLS has conducted two large-sample, nationwide surveys of the economic impact of multiple sclerosis in Australia.  The first, performed in 2003, showed that the financial cost of MS was over 600 million dollars annually.  The data were published in major part in a report by Access Economics(1).  The second study was conducted four years later in 2007, and enabled the longitudinal analysis of employment changes and reasons for loss of employment in Australians with MS(2). 

In the four year period 2003-2007, there was a pattern of Australians with MS losing their employment, even though this was a period of relative economic prosperity.  By 2007, a total of 56% of survey participants with MS had lost their employment and 64% were no longer in the paid workforce.  This unemployment rate in MS is much higher than for people with other chronic disease such as arthritis, diabetes and depression.(3)

A major finding from the AMSLS study was that people with MS were losing their employment mainly because of disabling symptoms of the disease, rather than because of “workplace” factors such as inflexibility of working conditions or being asked to leave or sacked.  Men were significantly more likely than women to lose their employment because of MS, and unemployed people with MS who found new employment did so mainly in part-time jobs. 

These results have been submitted for publication(2) and have been reported at a major international scientific meeting.(4)  An Employment Workshop was conducted by MS Research Australia in Sydney on 17th October 2009 to discuss these issues and to inform MS Society staff and other agencies who seek to help Australians with MS maintain their employment. 

 2. Patterns of prescription medication use by Australians with MS

The AMSLS investigates use of medications by Australians with MS, including optimising their use of the Pharmaceutical Benefit Scheme (PBS). An original series of surveys, conducted between 2004 and 2007, showed that because of side-effects or lack of efficacy, people with MS were eight times more likely to go off prescription immunotherapy altogether than to change to another PBS-listed immunotherapy, despite different side-effect profiles for different drugs.

The original surveys were followed up in 2009 and beyond by further investigations, including a more detailed assessment of side effects from the MS patients’ point of view. These studies are leading to a better understanding of medication adherence by people with MS and how to optimise their use of the PBS scheme.

3. Quality of life in relation to self-management by people with MS

Th

e AMSLS Annual Quality of Life Survey of Australians with MS is conducted in collaboration with researchers at Griffith University, Brisbane. The survey commenced in 2006, was repeated in 2007 and 2008 and data for three years are currently being analysed and written up for publication(5) by the Griffith University researchers.

Results to date have shown that, for people with MS, maintaining their psychological health is most important to quality of life and to their potential for self-management, more so even than the presence of physical disability. This is a positive message, because mood may be inherently more treatable than much of the physical impairment caused by MS.

Anything that promotes self-management is important to people with MS because it gives them independence and the power to control and pursue their own lives in the ways they wish.

4. Keeping cool: the air conditioning needs of people with MS

 Heat intolerance is a problem for many people with MS, due to the particular type of damage caused to brain and spinal cord nerve fibres during the disease. As little as 0.5 degrees centigrade increase in temperature can worsen symptoms.

Dr Michael Summers, Senior Policy Advisor to MS Australia, in collaboration with AMSLS set out to determine the current use of, and need for, air conditioning by people with MS from the various regions around Australia.(6) The survey obtained 2,385 responses (76%) with results summarised as follows:

* Ninety percent of people with MS reported being sensitive to heat, and run their air conditioners more frequently and for longer periods than other Australians.
* Economic modelling estimated that the average costs for people with MS across Australia to run their air conditioners between September and April were between $488 and $650, with costs higher in hotter regions.
* Overall, by comparison with available national data people with MS spent ten times as much on air conditioning as the average Australian household.
* The cost of air conditioning for people with MS is put in perspective when AMSLS economic survey data showed that in 2007, 52% of Australians with MS had incomes below $26,000.

The results from the air conditioning survey and recommendations for policy have been compiled in a report (6) and submitted to government agencies for consideration of financial subsidies and other assistance for heat-intolerant people with MS. Such government lobbying on behalf of Australians with multiple sclerosis is a major part of the work of MS Australia and the AMSLS.

 References

1. Access Economics Pty Ltd (2005) Report to MS Australia: Acting positively: strategic implications of the economic costs of MS in Australia. http://www.accesseconomics.com.au/publicationsreports/showreport.php?id=7&searchfor=2005&searchby=year.

2. Simmons, RD; Tribe, KL, McDonald, EA (2009) Living with multiple sclerosis: Longitudinal changes in employment and the importance of symptom management. (Submitted for publication, June 2009).

3. Australian Institute of Health and Welfare (2009). Chronic disease and participation in work. Publication Catalog Number PHE 109. Canberra: AIHW.

4. Paper presented by Dr Rex Simmons, 21st May 2009, as an invited speaker to the Annual Scientific meeting of the Multiple Sclerosis Society of Great Britain and Northern Ireland, London, May 2009.

5. Wollin, J, et al.: Quality of life and potential for self-management in Australians with multiple sclerosis. Paper in preparation

6. Summers, M and Simmons, R (2009) Keeping cool survey: Air conditioner use by Australians with MS, Public policy related results and recommendations. Report printed by MS Australia, 42pp, as submitted to government agencies and available on request.