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 research platform that gives people with MS a voice in matters of importance to them, through scientific surveys designed by professional researchers in appropriate fields.

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. In the 2014, following Dr Simmon's retirement the management of the AMSLS was transferred to Dr Ingrid van der Mei and her colleagues at the Menzies Research Institute Tasmania.

Over 3500 Australians with MS have volunteered to receive regular surveys, either by mail or online. A recently published comparison with other Australasian datasets has validated the large national AMSLS sample as being highly representative of Australians with MS (see reference 11 below).

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.

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. Personally identifying data is kept on secure computers that are not 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 contact Dr Ingrid van der Mei for further information: ingrid.vandermei@utas.edu.au or 03 6226 7710.

If you are a researcher and would like more information about the platform and opportunities for collaboration, please contact Dr Ingrid van der Mei ingrid.vandermei@utas.edu.au

AMSLS Surveys and Results

  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;
  4. Air-conditioning needs of people with MS who frequently require medical cooling; and
  5. The Needs of Australians with MS
  6. Publications

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

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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.

Two reports have been published on the Economic Impact of MS - Access Economics (1) in 2005 and an updated report, The Economic Impact of MS in 2010 Report, published in 2011.

Serial employment surveys have also enabled the longitudinal analysis of employment changes and reasons for loss of employment in Australians with MS (2). This research showed a pattern of reduced employment for Australians with MS, despite the study period being a time of relative economic prosperity. The unemployment rate in MS was also shown to be 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 or discrimination. 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 employment surveys have been conducted and the results will be released in due course.

As a result of this data, employment workshops were coordinated in 2009 and 2011 by MS Research Australia together with state-based MS organisations, people with MS and researchers, to discuss the issues arising from this data and investigate strategies for support and advocacy.

2.  Patterns of prescription medication use by Australians with MS

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. The data has provided insights into the reasons people with MS may switch or stop using medications and are 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

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An annual AMSLS Quality of Life Survey of Australians with MS was conducted between 2006 and 2008 in collaboration with researchers at Griffith University, Brisbane. The data has been published 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, which assists MS organisations to support people with MS, because mood may be inherently more treatable than much of the physical impairment caused by MS.

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, in collaboration with AMSLS, gathered data on the use of air conditioning by people with MS from around Australia. The results are summarised as follows revealed that ninety percent of people with MS reported being sensitive to heat and in comparison with available national data people with MS spent ten times as much on air conditioning as the average Australian household. The report of this research (6) resulted in successful lobbying to obtain financial subsidies and other assistance for heat-intolerant people with MS.

5.  The Needs of Australians with MS

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The National MS Needs Analysis 2012 survey 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. Over 2,900 responses were received from people with MS, a total of 12% of all Australian's with MS. 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.

References

  1. Access Economics (2005): Acting positively: Strategic implications of the costs of multiple sclerosis in Australia. Access Economics Publication, Canberra 2005.
  2. 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)
  3. 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)
  4. Simmons, RD: Life issues in multiple sclerosis. Nature Reviews (Neurology) 6 603-610 (2010)
  5. 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
  6. 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.
  7. 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
  8. 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
  9. 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.
  10. Verikos, G, Summers MP and Simmons, RD. The costs of keeping cool for Australians with multiple sclerosis. Australian Economic Review 46 45-58 (2013)
  11. 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
  12. Palmer AJ, Colman S, O'Leary B, Taylor BV, Simmons RD. The economic impact of multiple sclerosis in Australia in 2010. Mult Scler. 2013 Oct;19(12):1640-6. Epub 2013 May 7.
  13. 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 Care2013 Summer;15(2):90-7.