The Australian MS Longitudinal Study (AMSLS) is a survey-based research study that has been running since 2001 and now has over 3000 people completing research surveys each year. The study is designed to provide real life data about MS, which can be used by all MS medical and support services to effect change for the better for those with MS, their families and carers.
The AMSLS is one of MS Australia’s collaborative research platforms. The Study is a partnership between MS Australia and the Menzies Institute for Medical Research (University of Tasmania) and all projects are approved by the AMSLS steering committee, which includes representatives from people with MS, the MS state organisations, MS nurses, neurologists and MS Australia.
We encourage all Australians with MS over 18 years of age to register with the study and share their story. Enquiries from researchers wishing to collaborate or utilise this research platform are also welcome.
If you are a researcher and would like more information about the platform and opportunities for collaboration, please contact Professor Ingrid van der Mei.
Regardless of who you are, lifestyle choices, such as diet and exercise, can have an impact on your overall wellbeing. For those with MS, finding ways to maintain healthy choices when dealing with fatigue or other physical symptoms at the same time can be challenging.
We have several current projects focused on lifestyle factors people can control themselves, including looking into the effects of the “SNAP” factors (smoking, nutrition, alcohol and physical activity) on symptoms severity and quality of life, and what factors influence how much exercise people do and what types of exercise they are choosing to do.
Frequently, if you speak to someone with MS they will tell you that MS is not the only medical condition they are dealing with. With MS itself affecting everyone differently, further incorporating a range of other medical conditions in an effective treatment plan becomes incredibly challenging for health care providers.
We are looking into the presence of other medical conditions alongside MS, whether they occur before or after MS, which of these have the biggest impact on quality of life, and how they impact common MS symptoms. This information will be beneficial to guide the management of people with MS.
With the majority of people being diagnosed with MS at a time where they are just starting to gather momentum in their chosen career, the need to support people with MS to remain happy and productive in the workforce has been a long-term focus for the AMSLS (see key findings).
With longitudinal data available, we can examine people’s long-term work experiences, including the interplay between disclosure of MS at work, support at work, and the intention to quit, and what more can be done to assist people in reaping the best possible personal and social benefits from active participation in the workforce.
Over the last few years there has been an increasing number of people wishing to take more control over their own health and wellbeing. The InforMS system is being developed to provide people with the tools to help manage not just MS, but their health in general.
Sleep is essential to our functioning, but MS can adversely impact sleep, which then has flow on effects for other areas of life. We are quantifying how many people have issues with sleep, the factors that might influence sleep, and any resultant impacts on quality of life, daily functioning and other symptoms.
With MS nurses possessing a level of understanding about MS and its management that is often unmatched by the wider health care community, their availability in many clinics around Australia is an underestimated resource.
In collaboration with MS Australia, we are looking into how many people have access to an MS nurse, and how those nurses influence the care of someone with MS. The data will inform service planning for MS nurses around Australia.
With twice as many people with MS affected by anxiety and depression than the general population, we are examining whether people with MS are appropriately treated for depression and whether anti-depressants potentially have a positive effect on the progression of the disease.
The Australian MS Longitudinal Study (AMSLS) incorporates a wide range of questions to track how our participants are faring over time. Longitudinal themes range from the economic impact of MS, employment, quality of life, and influential lifestyle and environmental factors. Results from this long-term tracking provides essential information for planning support efforts, and importantly, when that support is provided, whether it does translate into a better quality of life.
Alongside the longitudinal surveys, one-off surveys have been used to gather additional data on specific areas of interest. The most widely known of these was the Keeping Cool survey, which provided the indisputable evidence on air-conditioning usage that MS Australia used to successfully lobby the government and obtain electricity subsidies and other assistance to combat the practicalities of dealing with heat intolerance experienced by many of those with MS.
The below sections provide summaries of the most recent AMSLS results. Please see the “Publications” tab for the full list of publications. If you would like more information on any topic, or the associated surveys, please contact the AMSLS team directly.
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.
Some costs associated with MS can be easily identified, understood and estimated, such as medications, equipment, and health professional appointments. These costs, however, only represent a small percentage of the true cost of MS, with the potential of other significant financial and life costs, such as lost wages, professional or unpaid family help to reduce the tasks and fatigue associated with everyday life, or ‘off’ days where general productivity is known to suffer.
The Health Economic Impact studies are the biggest commitment of the AMSLS, and gather in-depth information on quality of life, and the direct and indirect costs of MS to both individuals and Australia as a whole. With the study repeated every 5-10 years, the most accurate picture of life with MS in Australia is kept up to date directly from those living it, and ensures the most important issues can be monitored, updated and addressed on a regular basis.
In August 2018, the latest report was launched by the Hon Scott Morrison MP in Canberra, which enabled the key messages of the report to be widely distributed and translated throughout the media and the MS community. There have been some big wins since the previous report in 2010, with the newer higher efficacy DMTs directly translating to better employment outcomes, and subsequently, a significant decrease in the indirect cost of lost wages. However, the prevalence of MS is still on the rise, and the overall cost of MS per person has also risen, indicating MS remains a significant challenge to both individuals and Australia as a whole.
Most people are aware certain lifestyle choices can assist in maintaining optimal health. The Royal Australian College of General Practitioners produces research backed guidelines on these modifiable lifestyle behaviours, that includes recommendations on smoking, nutrition, alcohol and physical activity (commonly known as the “SNAP” factors).
One of the AMSLS collaborations with the University of Melbourne has been exploring to what extent people with MS follow these recommendations. Further, with twice as many people with MS affected by anxiety and depression than the general population, they wanted to examine whether lifestyle factors were associated with mental health.
Not being physically active, smoking (more than one cigarette, cigar or pipe per day) and consuming two or more standard drinks per day were linked to increased occurrence of depressive symptoms, with the severity of these depressive symptoms also associated with smoking and insufficient fruit and vegetable intake.
Smoking was also associated with severity of anxiety symptoms, but no other lifestyle factors were.
Conversely, those who did follow the health recommendations on the whole were found to have lower prevalence and severity of depressive symptoms, and for each extra healthy recommendation followed, the occurrence and severity of depressive symptoms reduced proportionally.
While these results confirm links between lifestyle factors and depression and anxiety outcomes, this may indicate that people with depression have more trouble adhering to health recommendations, as well as those who don’t follow health recommendations have a higher risk for depressive symptoms.
Further studies are now required to assess whether making changes to these lifestyle factors does in fact translate to a reduction in symptoms of MS, such as depression. However, these findings are a fantastic stepping stone towards developing a strong, evidence-based and holistic approach towards the management of MS, which includes factors people can control themselves.
With MS itself affecting everyone differently, one of the biggest challenges for health care providers is having a treatment plan that is effective not just for MS, but that also incorporates and supports any other health conditions (comorbidities) that may be present.
A closer look at the impact of comorbidities on people’s health-related quality of life found that both mental comorbidities, such as depression and anxiety, and physical comorbidities, particularly diseases of the musculoskeletal system (osteoporosis, osteoarthritis and rheumatoid arthritis), have the biggest impact on quality of life for people with MS. There is also a direct association between the total number of comorbidities and MS symptom severity, with physical comorbidities, such as musculoskeletal disorders, having the largest impact on the severity of MS symptoms.
Considering these comorbidities can affect every aspect of people’s lives, a closer investigation into how comorbidities can affect employment outcomes was carried out.
As a quick comparison, for those in the workforce with no comorbidities, the average productive work time lost over a 4-week period due to the impacts of MS symptoms was 1.3 days. For those with at least one other condition, the time lost increased to 2.5 days.
Importantly, 90% of working-aged participants reported having one or more comorbidities. Further, 38% said at least one of their comorbidities limited their daily activities, with the most common of these being osteoarthritis, migraines, anxiety, and depression.
Considering the prevalence in population and the impacts on an individual’s work productivity, population costs of work productivity loss were highest for groups of people with depression, allergies, anxiety, migraines and osteoarthritis.
While the number and impact of physical comorbidities increases significantly with age, it is the psychological conditions, such as depression and anxiety, that are far more likely to occur across the whole working life span. They can also impact quality of life and other MS symptoms, such as fatigue and cognitive function.
Considering the impacts and high prevalence, early and routine screening and support for anxiety and depression in people with MS could have huge benefits for both work and everyday life.
Taking into account factors such as current age, gender, and age at diagnosis, self-reported symptom severity data from AMSLS surveys showed almost all symptoms were reported with a higher severity for those with progressive-onset MS in the early stages of disease.
With 1 in 10 people with MS diagnosed with primary progressive MS, and effective treatments still being relatively limited, the need to improve health management in maximising quality of life is clear. As such, the AMSLS examined whether associations were different for people with progressive MS in all our studies to assist in the journey towards better understanding and treatments for this form of MS.
With great advancements being made over the past decade to support those with MS to remain in paid employment (see Closing the gap: Longitudinal changes in employment for Australians with MS below), there has been a steady rise in workplace participation in recent years. Encouragingly, recent results showed that absence from work due to MS was also relatively low, with an average of only 3.4% of potential work days missed due to symptoms of MS.
Despite this good news, over half of those employed still reported at least some loss of productivity while at work, with 10.8% of productive time lost overall while people were at work, but experiencing symptoms of MS. Closer examination of the 13 common MS symptoms showed that two groups of symptoms were having the biggest impact on people’s ability to work, namely ‘fatigue and cognitive symptoms’ and ‘pain and sensory symptoms’.
With great advances being made in assisting those to remain in the workplace, the focus now needs to shift slightly to making sure that time spent at work is comfortable, productive and sustainable.
While employers can play a big role in providing the required support for those with MS, the need for resources to allow individuals to be able to proactively help themselves has also been recognised. One such program that has evolved from these findings is the MS WorkSmart project, aimed at finding practical solutions to minimise fatigue and remain effective and productive in the workforce.
From 2010 to 2015, there was a distinct change in disease modifying therapy (DMT) use for those relapsing-remitting MS (RRMS). During this time, many people transitioned from the classical injectable DMTs, like beta-interferons, to the more recently approved, higher efficacy DMTs (Gilenya, Lemtrada, Tysabri and Mitoxantrone).
With employment previously proving quite challenging for many with MS, the effectiveness of the new DMTs has already transitioned to the workforce. In particular, those using Tysabri (Natalizumab) and Gilenya (Fingolimod) were 2-3 times more likely to report that their DMT increased their work productivity, work attendance and working hours, compared to those on beta-interferons.
While these results are highly encouraging, there may also be higher risks associated with the use of these DMTs and all treatment decisions need to be made, in the full knowledge of a risk/benefit analysis, by individuals and their neurologist or treating doctor.
Nobody enjoys going to the dentist, but people with MS are often faced with extra challenges to maintain good oral health, including physical symptoms that directly affect dental health such as muscle weakness, spasticity or lack of coordination, swallowing and pain issues. In addition, for those experiencing depression, self-care can sometimes be hard to maintain. The School of Dentistry at the University of Queensland recognised the importance of quantifying what the biggest concerns were for those with MS when it came to personal dental hygiene routines and accessing oral health services.
The 2016 Dental Health Survey revealed those with MS still struggle more with poorer oral health than the general Australian population. This is in spite of the fact that those with MS actually prove to be more conscientious dental patients who actually visit their dentist regularly and remember to brush and floss.
Whether the cause of dental issues is side effects from medication, MS symptoms or another reason, these results show there is a need for additional advice and support beyond brushing and flossing to ensure those with MS can maintain a good level of oral health.
In the early 2000’s, those with MS faced significant hurdles in maintaining suitable employment, translating to a far lower employment participation rate compared to the general population. By 2010, the gap between the percentage of people employed with MS and the general population had increased significantly to 14.3%.
By 2013, however, a reversal had finally begun with 57.8% of those with MS successfully employed, representing a much smaller gap of 3.5% to the general population. While 16% of people had earlier indicated they felt they were likely to leave work in the next 12 months, the actual percentage who ended up leaving was only 6%. During this period, there was an overall increase in the number of men with MS employed full-time, however, the number of men in full and part time employment combined remains significantly below the general population. For women, the gap has closed almost entirely.
This was a very positive result, and has been attributed, at least in part, to the more effective DMTs (see Disease modifying therapies (DMTs) and employment above), coupled with more active employer support, where the majority of people who asked for environmental or role changes indicating they had received the changes they needed.
Heat intolerance is a problem for many people with MS, due to increasing temperature slowing down the signals in myelin damaged nerve fibres. As little as 0.5 degrees centigrade increase in temperature can worsen symptoms.
Dr Michael Summers knew heat intolerance was something people with MS had to deal with on an everyday basis, and that in practice, this translated into needing to use air-conditioners far more frequently than the general population.
In a collaboration between MS Australia and the AMSLS, the “Keeping Cool” survey revealed that in comparison with available national data, people with MS spent ten times as much on air-conditioning than the average Australian household. The report from this research provided the factual evidence used in successful lobbying to obtain financial subsidies and other assistance for heat-intolerant people with MS.
Participating in the Australian MS Longitudinal Study (AMSLS) involves completing 2-3 surveys each in the comfort of your own home, either online or as a paper-based questionnaire. When you join the study, you will need to complete a baseline survey and then you will be invited to join our regular research surveys. You do not need to complete every survey, but as this is a longitudinal study, the more information you can contribute, the stronger the study becomes.
To get a feel for our topics of research, see the ‘Key findings’ tab and the ‘Current projects’ section in the AMSLS overview.
Please read the information sheet below. If you are happy to become a participant in the study, then complete the consent form and email it to AMSLS.firstname.lastname@example.org
To join the study you need to be:
To complete surveys you must first be a registered participant of the AMSLS and will need to provide the ‘token’ or pin number you have been provided with to enter the survey.
If you are not yet registered with the AMSLS please visit the Become a Participant page.
The Australian MS Longitudinal Study (AMSLS) research platform is available for researchers, MS state organisations or other stakeholders who can benefit from this resource. The AMSLS study can provide existing de-identified data and assist in collecting new data.
Scroll down for more information on data and survey requests and current AMSLS collaborative projects.
There are two main types of data:
To apply to access the existing AMSLS data:
The AMSLS can include a number of questions to AMSLS surveys, or can run standalone surveys for you. To apply to have your questions included in an AMSLS survey:
Area of focus
Workplace wellbeing: Keeping those with MS happy in the workforce including looking at the interplay between disclosure of MS at work, support at work, and intention to quit.
Dr Claudia Marck
University of Melbourne
Modifiable Lifestyle Factors
Maximising healthy lifestyle decisions with the challenges of MS: Supporting diet, exercise, smoking and alcohol choices to optimise well-being.
Dr Yvonne Learmonth
Physical activity: Does it matter whether you live in a regional or remote area?
Dr Cynthia Honan
University of Tasmania
Maximising sleep: Examining factors that most influence sleep and assessing the impact on quality of life and daily functioning.
Professor Andrew Palmer
Menzies Institute for Medical Research
Health economic impact of MS: Examining the direct and indirect costs associated with MS to individuals and Australia in general.
Belinda Bardsley (President MS Nurses Australia), Sue Shapland (MS Societies National Services Leadership Group)
Examining ways to maximise the availability and health care provided by MS Nurses
This concern generally relates to those questions that ask how you feel today, or the last week, or 4 weeks. For many, how you feel or your symptoms aren’t consistent and it may well depend on which day you are answering the survey as to which answer you select. Reasons for the change may be that your symptoms change depending on whether it’s summer or winter, or whether you’re having a good or bad day physically or emotionally, or in fact, there may be something else entirely non-MS related that is affecting your answers, such as another medical condition or other life event.
Short of asking you to answer the same questions every day, or indeed, every hour, to track your progress over a full year, we are always going to come up against the issue that the day you answer a survey may not be a good reflection of ‘normal’. This is one issue we are discussing and trying to decide what we can ask of you that will be both representative, and not too much of a burden. For now, while there are certainly issues, we are aware of them and in general, the survey results do give an accurate overall picture.
The “General Information” section is the first section in each of our surveys where we ask for your AMSLS ID, today’s date, your date of birth, your gender and your town of birth.
We know that this section is frustrating for many of you as you are aware we already have this information. We do apologise for that, however, we need this information in order to make sure your answers are actually you.
For each survey we administer, there are generally between 50-100 responses where people have mistyped or miswritten their AMSLS ID. In the case of the hand-written paper surveys, there is also the chance the ID has been read into the system incorrectly. In each case we need to manually match up existing information to ensure the ID is corrected and the information is recorded against the right person and unfortunately, we need your date of birth, gender and town of birth to make sure we get it right. You would be surprised how many people share a date of birth (including the year!)
We are working on ways to ‘pre-fill’ data for everyone, not only for identification purposes, but for general questions where we DO already have your information, but there are many ethical, security and administrative issues to work through before we can do that. In the meantime, please feel free to curse us under your breath, but know why we have to do it this way for now.
Even if a survey doesn’t sound relevant from the title, please take the time to complete it as the information you provide is crucial to the overall picture of people with MS.
For example, you may not be employed, but the Employment surveys have questions about retirement, whether you are seeking work if you are unemployed, and the hours of unpaid and voluntary work you may do. Without the input of those not currently in the work place, we would be missing a large amount of information.
Similarly, the Medications and Disease Course survey has commonly been interpreted as only being applicable to people who are currently on medications. Aside from the fact that most of the survey is NOT about medications, how can we see how people are going who are NOT on any medications if we never get a response from them?