Australian MS Longitudinal Study (AMSLS)
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 follow this link 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.
- The number of people living with MS in Australia increased by just over 20% from 21,283 in 2010 to 25,607 in 2017.
- The latitude gradient of prevalence continues, with Tasmania recording the highest prevalence at 138.7 per 100,000 people (almost double that of Queensland at 74.6 per 100,000).
- Total costs for all people with MS in Australia have increased substantially over time from $1.24 billion in 2010 to $1.75 billion in 2017 (an increase of 41%).
- The annual total costs of MS per person (direct and indirect costs) increased by 17% from 2010 to 2017, driven largely by increased costs of Disease Modifying Therapies but partially offset by decreased costs of lost wages and decreased informal care costs.
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.
- 90% of AMSLS participants do not smoke.
- 83% consume alcohol within recommended levels (two standard drinks or less per day).
- 10% of participants met the optimal intake of two serves of fruit and five serves of vegetables a day.
- 39% had a healthy body mass index (BMI).
- 53% engaged in adequate levels of physical activity.
- 3% of participants met all five healthy lifestyle factor requirements,
- Smoking (more than one cigarette, cigar or pipe per day) and alcohol (consuming two or more standard drinks per day) are linked to increased occurrence of depression.
- Severity of depression also increased with increasing levels of smoking.
- Those who followed a health diet (five or more serves of vegetables per day and two or more serves of fruit at least six days per week) were on the whole found to have lower severity of depression.
- For each additional healthy behaviour, the occurrence and severity of depression reduced proportionally.
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.
- 90% of working-aged participants reported having one or more comorbidities.
- The top four most common comorbidities were depression (45%), anxiety (42%), allergies (38%), and migraines (30%).
- 38% of participants had at least one comorbidity that limited their daily activities.
- The top four limiting comorbidities were osteoarthritis (51%), migraines (40%), anxiety (33%), and depression (29%).
- The mean MS-related work productivity loss for those with at least one comorbidity was 2.5 days in the past 4 weeks, compared to 1.3 days for those who reported no comorbidities.
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.
- 1 in 10 people with MS will be diagnosed with the primary progressive form of the disease.
- Symptoms severity ratings were more severe for those with progressive-onset MS in 11 of the 13 common MS symptoms.
- Cognition and vision problems were the only 2 symptoms that did not differ very much between the two MS onset types.
- The closer it is to the diagnosis of MS, the larger is the difference between relapsing-onset MS and progressive-onset MS symptoms’ severity, with the gap closing as time progresses.
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.
- 56% of participants who were employed experience at least some loss of productivity due to their MS.
- 3.4% of total potential work time was lost due to days people were unable to attend work at all due to their MS.
- An additional 10.8% of productive time was lost where people were at work, but unable to be fully effective due to the impact of MS symptoms.
- The symptoms most strongly influencing people’s ability to work effectively were found to be fatigue and cognitive symptoms, and pain and sensory symptoms.
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.
- 90.6% of participants were currently using a DMT.
- 71.5% of participants were employed (26.4% full-time, 33.8% part-time, 11.3% self-employed)
- 10.8% reported their DMT helped increase their working hours, 9.9% said they missed less hours from work due to their DMT, and 17.9% reported an increased ability to perform their work duties due to their DMT.
- Those using the more recent DMTs (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.
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.
- 75% of respondents experienced at least two or more issues with oral health over the previous 12 months.
- Only 8.4% reported having no issues at all over the same period.
- Common oral health issues in the last 12 months:
- Mouth dryness: 68.4%
- Teeth sensitivity: 64.7%
- Toothache: 57%
- Change of taste: 40.5%
- Orofacial pain: 39%
- Percentage who brush daily: 97.7%
- Percentage who floss at least weekly: 61%
- Percentage who delay dental care due to cost: 30% (equal to the general Australian population)
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.
- Employment increased for people with MS 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.
- 95% of participants who asked for changes in their role received them.
- 82% of participants 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 percentage of people leaving between 2010 and 2013 was 6%.
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.
- 90% of people with MS reported being sensitive to heat.
- People with MS spent ten times as much on air-conditioning when compared to the average Australian household.