The Australian MS Longitudinal Study
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 2014, following Dr Simmon's retirement the management of the AMSLS was transferred to Associate Professor Ingrid van der Mei and her colleagues at the Menzies Institute for Medical Research at the University of 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, service needs, air conditioning use and medication use (see below for details). Collaborations of the AMSLS with researchers investigating the information needs of people with MS, and the impact of disclosure of a diagnosis of MS to employers have also yielded important results and outcomes for people with MS.
The AMSLS has ethical approval from an NHMRC-constituted Human Research Ethics Committee, 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, with a confirmed diagnosis of MS and aged over 18 years is eligible to join the Study.
If you are a person with MS and are interested in participating in the AMSLS please use the quicklinks above to download the Information Sheet and Consent Form, or contact the AMSLS team for further information: AMSLS.firstname.lastname@example.org or 03 6226 4739
If you are a researcher and would like more information about the platform and opportunities for collaboration, please contact Associate Professor Ingrid van der Mei email@example.com or 03 6226 7710
AMSLS Surveys and Results
- Employment surveys
- Economic Impact of 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 now conducted a number of Employment Surveys. Two research papers have been published, which can be downloaded in full using the links below.
1. Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management. Simmons RD, Tribe KL, McDonald EA. J Neurol 2010;257:926-936.
Aim of publication:
Obtain Australian data on employment and determine the reasons for leaving employment.
• 56% of MS patients had lost employment due to MS and 64% were not in the paid labour force.
• Over 4 years, the longitudinal loss of employment was 5.4%.
• Compared to the Australian population, people with MS were less likely to be employed (49.8% vs 59.6%). Of the employed people, people with MS were less likely to be employed full-time (29% vs 40.8), while a similar number was employed part-time (20.8% vs 18.8%).
• The most frequently listed symptoms relating to employment loss were fatigue (70%), mobility-related symptoms (44%), arm and hand difficulties (39%), and cognitive deficits (37%). Many people felt that that they were too stressed by the effort to work (37%), or that they felt they were not doing a good enough job to their own standards (33%). 17% had been asked to leave employment, 19% mentioned the more suitable work was not found in the same organisation, and 12% was not allowed flexible work hours. Reasons related to transport (to or from work), workplace mobility barriers, and equipment use (with the exception of the need to stand for long periods) were all listed by less frequently.
How will this data be used?
This data is extremely useful to develop interventions. It shows where the efforts should be focused (e.g. on symptom management such as fatigue reduction).
Key message for people with MS
The data suggests that many employees with MS are leaving their planning for effective symptom management, and for appropriate accommodations in the workplace, until it is too late. Accessing Employment Services early, via e.g. MS Societies, can be extremely useful. Considering these employment aspects early in the disease process can possibly keep people in the workforce for longer.
2. Disclosure of diagnosis of multiple sclerosis in the workplace positively affects employment status and job tenure. Kirk-Brown A, Van Dijk P, Simmons R, Bourne M, Cooper B. Mult Scler 2013.
Aim of publication:
Many people with MS will face the question whether it is better to disclose the diagnosis of MS to employer or whether it is better not to disclose. This study examines the relationship between disclosure of diagnosis and employment status of employees with MS over a three-year period.
• 42% reported positive employer atti¬tudes to MS, 27% reported negative employer attitudes leading to discrimination, and 31% were neutral in their response.
• People who had disclosed their MS status to an employer were more likely to remain in employment!
• Disclosure was associated with positive employer attitudes, while non-disclosure was strongly related to an expectation of negative attitudes leading to potential discrimination from their employer.
• This seems to indicate that employees who disclose are receiving more assistance with workplace accommoda¬tions, social support and possibly even more effective symptom management than non-disclosing employees.
How will this data be used?:
This data is important for people with MS who need to make decisions around disclosure. It is also important for vocational rehabilitation providers engaged in counselling employees with MS or other disabilities in weighing up the costs and benefits of disclosure.
Key message for people with MS:
These results suggest that those who disclosed their MS to their employer were more likely to be employed longer-term. Indeed, the majority of employer responses to disclosure are positive and supportive. However, potential discrimination following disclosure may well still occur for a minority of individuals. Another paper indicates that only 8% of people had their job terminated due to disclosure of their MS, while the another AMSLS paper indicates that 17% were asked to leave their employment. Thus, the majority of workplaces value their employees and will provide support to maintain them.
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.
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.
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 point of view of people with MS.
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 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.
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.
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.
- 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, Simmons RD. The economic impact of multiple sclerosis in Australia in 2010. Mult Scler. 2013 Oct;19(12):1640-6. Epub 2013 May 7.
- 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.