Vision, past surveys and results - MS Research Australia

Vision, Past Surveys and Results

The Australian MS Longitudinal Study aims to collect and analyse self-reported data on matters of importance to people living with MS, through the use of well-designed and ethically approved surveys. This data can then be used to better understand the challenges of living with MS and facilitate the provision of services and advocacy for people with MS. The AMSLS also provides a resource (or ‘Platform’) for MS researchers who can access an established, well-characterised cohort of people with MS for ethically approved, predominantly social-and-applied, collaborative research projects. Researchers can collaborate with the AMSLS project managers to access the data that has already been collected to answer specific research questions, or to develop new surveys or include specific questions in ongoing surveys.

For a more detailed description of our vision and goals for the AMSLS please use the links 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. A summary of all studies and their results can be found below.

Economic impact of 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.

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.

economic impact
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, 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.

AMLS Health Professionals and Researchers
Quality of life in relation to self-management by people with MS

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.

Quality of Life
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 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 Needs of Australians 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.

The Needs of Australians with MS
Employment Surveys

1. Living with MS: longitudinal changes in employment and the importance of symptom management.

Simmons RD, Tribe KL, McDonald EA. J Neurol 2010;257:926-936. (2)

Aim of publication:

Obtain Australian data on employment and determine the reasons for leaving employment.

Employment Surveys

Key findings:

  • 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.

MS Australia and the MS State Societies in your state  can provide information, resources and advice for both you and your employer to support you with your decision to disclose your MS in the workplace and seek the accommodations that you need to remain productive in your job.

2. Disclosure of diagnosis of MS 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.

Employment Surveys

Key findings:

  • 42% reported positive employer attitudes 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 accommodations, 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.

MS Australia and the MS State Societies in your state can provide information, resources and advice for both you and your employer to support you with your decision to disclose your MS in the workplace and seek the accommodations that you need to remain productive in your job.

3. Closing the gap: Longitudinal changes in employment for Australians with MS

Van Dijk PA1, Kirk-Brown AK2, Taylor B3, van der Mei I3. Mult Scler. 2016 Nov 24. pii: 1352458516678934. [Epub ahead of print]

Aim of publication:

Obtain updated Australian data on employment and determine the reasons for leaving employment.

Employment Surveys

Key findings:

  • Study followed 1260 people with MS who participated in the Australian MS Longitudinal Study annually over four years from 2010-2013, surveying them on their job retention, work roles and work environment
  • Employment levels have improved for people with MS between 2010 and 2013
  • Employment increased from 48.8% in 2010 to 57.8% in 2013
  • the gap in employment rates for people with MS compared to the general population fell from 14.3% in 2010 to 3.5% in 2013.
  • This was mostly due to an increased number of men with MS employed full-time over this period. However, the number of men in full and part time employment remains significantly below the general population.
  • For women the gap has closed almost entirely
  • 95% of people with MS who asked for changes in their role received them and 82% of people who asked for changes to their environment obtained them.
  • People overestimated their likelihood to leave work, with 16% reporting that they were likely to leave work in the next 12 months but the actual number of people leaving between 2010 and 2013 was 6%.

How will this data be used?

This data will be used for advocacy to encourage further awareness and support for working people with MS. In particular it will be used to focus attention on the ongoing need to support men with MS in maintaining employment.

Key message for people with MS

The data suggests that many employees with MS despite being concerned about needing to leave work are infact able to maintain their employment and this has been improving steadily over the last few years. The majority of people who ask for workplace or work role changes are supported by their employers and this can help with work retention.


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