The Australian MS Longitudinal Study
The Australian MS Longitudinal Study (AMSLS) was established following a meeting of Australian MS researchers and prominent international MS database researchers, held in May 2000. Aided by project grants from MS Australia, the AMSLS database was established at Canberra Hospital by Dr Rex Simmons in 2001, before becoming the first “research platform” funded by MS Research Australia in 2005.
An original cohort of 2,000 volunteers with MS was recruited in 2002 with the assistance of state-based MS organisations. Now over 3000 Australians with MS have volunteered to receive regular surveys. A recently published comparison with other Australasian datasets has validated the large national AMSLS sample as being highly representative of Australians with MS (11).
The AMSLS has conducted numerous nationwide self-report surveys on topics as diverse as economic impact, employment, quality of life, needs, air conditioning use, medication use and online information-seeking (see below for details).
The AMSLS has ethical approval from an NHMRC-constituted HREC, and is overseen by a Steering Committee, chaired by Dr Elizabeth McDonald.
Currently about 50% of respondents complete paper surveys and 50% complete online surveys on a dedicated, encrypted website which also hosts the AMSLS database.
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 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.
Any Australian resident diagnosed with MS after June 2002 is eligible to join the Study.
If you are a person with MS and are interested in participating in the AMSLS please read the following documents:
If you are a researcher and would like more information about the platform and opportunities for collaboration, please contact Dr Rex Simmons firstname.lastname@example.org
AMSLS Surveys and Results
- Economic impact of MS with an emphasis on the reasons for high loss of employment by Australians with MS
- Patterns of prescription medication use by Australians with MS;
- Quality of life in relation to self-management by people with MS;
- Air-conditioning needs of people with MS who frequently require medical cooling; and
- The Needs of Australians with MS
The AMSLS has conducted two large-sample, nationwide surveys of the economic impact of multiple sclerosis in Australia in 2003 and 2007. The data have enabled detailed analysis of the cost of MS to individuals and the Australian community and the longitudinal impact of MS on employment.
Serial employment surveys have also 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. Fatigue was a leading cause of their departure from the paid workforce, cited as the primary reason by 70% of Australians who had left employment.
Further data from employment surveys is expected to lead to further publications over the next year.
Employment Workshops have been conducted by MS Research Australia in 2009 and 2011 to discuss the issues arising from this data and to inform MS Society staff and other agencies who seek to help Australians with MS maintain their employment.
The AMSLS has investigated the use of medications, both prescription and over-the-counter, by Australians with MS. 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.
An annual AMSLS Quality of Life Survey of Australians with MS was conducted in collaboration with researchers at Griffith University, Brisbane. The survey commenced in 2006, was repeated in 2007 and 2008. The data has been accepted for publication in the International Journal of MS Care (Wollin et al, 2013).
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.
Promoting self-management is important to MS organisations and to people with MS, providing independence and empowering people with MS to pursue their own lives in the ways they wish.
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, a 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. The results are 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 published in the peer-reviewed literature (7) and as a report (6). The report was 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.
The National MS Needs Analysis 2012 survey received nearly 2,900 responses from people with MS; some 12% of the total group of people with MS in Australia. The research was undertaken on behalf of Multiple Sclerosis Research Australia and MS Australia by Dr Marita McCabe and colleagues at Deakin University in collaboration with the AMSLS.
The National MS Needs Analysis Report provides a detailed analysis of the needs of people with MS, both met and unmet, in the categories of information, employment, transport, psychological services, peer support, equipment, other support services and respite care.
The report shows that nearly one in five Australians with multiple sclerosis (MS) struggle to have basic home modifications and equipment, including air conditioning, which is needed for them to manage their symptoms. Assistance to manage MS in the workplace and advice on financial planning and benefits was also a significant area of need. Counseling and peer support also featured as areas of great need, particularly for the newly diagnosed.
The report will inform the provision of services and target research into the future for MS Australia, the state MS organisations and MS Research Australia.
- Access Economics (2005): Acting positively: Strategic implications of the costs of multiple sclerosis in Australia. Access Economics Publication, Canberra 2005.
- Simmons, R. D., Tribe, K. L. & McDonald, E. A. Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management. Journal of Neurology 257 926-936 (2010)
- Wollin, JA, Fulcher, G, McDonald, EA, Spencer, N, Mortlock, MY, Bourne, M and Simmons, RD: Psychosocial factors that influence quality of life and potential for self-management in multiple sclerosis. International Journal of MS Care 12 133-141 (2010)
- Simmons, RD: Life issues in multiple sclerosis. Nature Reviews (Neurology) 6 603-610 (2010)
- Palmer, A; Covance Pty Ltd and Simmons, RD: Economic impact of multiple sclerosis in 2010: Australian MS Longitudinal Study. Report commissioned and published by MS Research Australia, 2011
- Summers, MP and Simmons, RD: Keeping Cool Survey: Air conditioner use by Australians with MS. Public policy related results and recommendations. Report published by MS Australia, 2009 (used for State govt lobbying for medical cooling rebates on electricity use by people with MS.
- Summers, MP, Verikios, G and Simmons, RD. Keeping cool: use of air conditioning by Australians with multiple sclerosis. Multiple Sclerosis International 2012, Online Open Access Article ID 794310
- Honan, CA, Brown, RF, Hine, DW, Vowels, L, Wollin, JA, Simmons RD, Pollard JD. The multiple sclerosis work difficulties questionnaire. Multiple Sclerosis Journal 18 871-880 (2012) PMID 22146603
- McCabe, M, Ebacioni, K, Simmons, RD, McDonald EA and Melton, L: A needs analysis of Australians with MS. AMSLS Survey and Report commissioned by MS Research Australia, 2012.
- Verikos, G, Summers MP and Simmons, RD. The costs of keeping cool for Australians with multiple sclerosis. Australian Economic Review 46 45-58 (2013)
- Taylor, BV, Palmer, A, Simpson, S Jr, Lucas, R, NZMSPS study group, Simmons, RD, Mason, D, Pearson, J, Clarke, G, Sabel, C, Willoughby, E, Richardson A Abernethy, D. Assessing possible selection bias in a national voluntary MS longitudinal study in Australia. Multiple Sclerosis Journal 2013 e-pub ahead of print DOI: 10.1177/1352458513481511
- Palmer, AJ, Colman, S, O’Leary, B, Taylor, BV and Simmons, RD. The economic impact of multiple sclerosis in Australian in 2010. Multiple Sclerosis Journal 2013 in press.
- Wollin, JA, Spencer, N, McDonald, EA, Fulcher, G, Bourne, M and Simmons, RD. Longitudinal changes in quality of life and related psychosocial variables in Australians with MS. International Journal of MS Care (accepted for publication.)