The Hidden Costs of multiple sclerosis (MS) 

New research has shown for the first time what people with peoplewith MS have had to spend themselves to maintain an independent standard of living.

The study from Swansea University Medical School has found that people with MS and their families are having to fund up to 75% of non-medical costs from their own pockets. Previous research in this area has only looked into the cost of drugs and overnight stays in hospital. The cost from people’s own pockets has not been looked into in any detail before.

What is Multiple Sclerosis? 

Multiple Sclerosis (MS) is an autoimmune neurological disorder that is the commonest cause of disability in adults of working age.  MS affects more than 120,000 people in Britain and around 2.5 million people worldwide. The symptoms of MS have a profound effect on people’s day to day lives due to the physical and cognitive effects of the disease that can lead to loss of employment and a profound personal impact. MS is a particularly harsh condition, as can affect people just at the point that they are typically starting to really flourish in their careers and start families. Costs in MS have focused on the high cost of treatments that mainly target early MS and the personal costs have not being looked at in detail.

The Study 

The UK MS Register is a research database operated by Swansea University and funded by the MS Society. Data is routinely collected from people with MS and from their doctors and nurses both online and through their specialist. It’s one of the largest databases globally with real world data in MS. In partnership with Sanofi a survey about the cost of MS both to society but also to the person was sent to people with MS by the UK MS Register. Five hundred and thirty seven people with MS completed the survey over 6 weeks and this was combined with data that the person had already given to the MS Register. This included: the severity of their disease, type of MS, age, gender, employment status and their ‘normal’ quality of life.

What did we find? 

We divided costs into medical and non-medical. Medical costs include: admissions to hospital, rehabilitation, blood and other tests such as X-Rays and MRI scans. Non-Medical costs include: adaptations to houses – including fitting of handrails and extensions, wheelchairs and car adaptations.

The medical costs, paid for by the NHS or social care were £3,244 per person per year and the costs increase as the disease became more severe. For the non-medical costs 75% came of out peoples own pocket (£939 per person per year), these costs dramatically increase with increasing disease severity.

These adaptations enabled people with disabilities either to stay at home or get out of hospital more quickly, safely and efficiently, indirectly reducing costs to the NHS.

The MS Register is open to new participants, if you have MS and live in the UK, sign up today and help make sense of MS!

 

Return to the MS Register Hub

Belfast Patient Experience Questionnaire

Dr Gavin V McDonnell, Belfast Health and Social Care Trust

MS is a complex and challenging condition for many if not all patients. A range of healthcare professionals can play key roles in treatment and management. We are interested in establishing across the UK just who patients see when attending outpatient clinics and whether they feel that others should be involved to meet their needs best.

Over the past 20 years, there have been significant and welcome developments in disease modifying therapies (DMTs). Increasing choice can however lead to complexity for patients in particular and their clinicians. We are interested in understanding how patients perceive the decision making process around treatments and how involved and informed they feel.

MRI (Magnetic Resonance Imaging of the brain with or without spinal cord) has had an important role in the diagnosis of MS for over 25 years and increasingly it is now used to assess disease stability and the safety and effectiveness of treatments. We are keen to establish how interested patients are in seeing their own MRI scans at clinic appointments and what their current level of access is.

Finally, we want to understand the patient perception of lumbar punctures (LPs/spinal taps). This can be an uncomfortable procedure for patients but does play an important supportive role in the diagnostic process. However it is also being suggested that lumbar punctures and analysis of the spinal fluid (also known as CSF) obtained could be of value beyond diagnosis, providing prognostic (predictive) information, assessing treatment effectiveness and guiding future treatment choices. Given the nature of the procedure we are keen to establish whether it would be of practical utility by testing its acceptability to patients.

Our goal is to obtain information across the UK that could improve service developments for patients with MS, improve the patient experience and guide future research and treatment approaches. Specifically we would like to test your experience of outpatient clinics, access to MRI scans, the information and decision making around disease modifying therapies (DMTs) and your attitude to the potential use of lumbar punctures (LPs/spinal taps) to improve our understanding of the processes underlying MS and potentially assess the effectiveness of treatments.

By Dr Gavin V McDonnell, Belfast Health and Social Care Trust

 

Return to UK MS Register Hub

A trial-ready community

The Stop-MS appeal by the MS Society aims to be in the final stages of testing treatments (to slow down or stop disability progression) for everyone with MS by 2025. They plan to raise £100 million and part of this funding will go towards the development of an “MS Trials Platform”.

The ambition of the MS Trials Platform is to develop treatments up to three times faster than is currently done now. It will provide a structure to test new and re-purposed drugs (those that are already used in other conditions) more quickly and cheaply. It also aims to have a community of people ready who are interested in MS Trials by having them pre-register so they can be contacted if they are eligible.

Another aim of the MS Trials Platform is to ensure that it is accessible to as many people with MS as possible.

The MS Register will be asking their participant’s to answer a questionnaire on their views on the idea of the MS Trials platform, what might make people decide to register and if they did, how they might like to be communicated with regarding potential trials.

 

Return to the UK MS Register Hub

Flexibility of thoughts

We know MS can cause spasticity in your body, maybe this can happen with thought processes too.

Our colleagues in the Institute of Mental Health in the University of Nottingham are looking into whether there could be justification for trialing a therapy for people with SPMS which aims to target ‘thinking inflexibility’ which can lead to becoming caught up in negative thoughts.

What do we mean by flexible thinking?

Flexible thinking is the ability to focus and engage fully in what we are doing, rather than being pushed around by our thoughts and feelings, and to make more effective choices based on the things that really matter to us

How flexible is your thinking?

The purpose of this project is to understand the relationship between anxiety, low mood and thinking flexibility in those with SPMS.

Those who are particularly inflexible may become “caught up” in negative thoughts, and feel these need to be controlled which restricts their ability to choose how to behave. However, those with greater thinking flexibility may be able to continue to live fulfilling and productive lives whilst allowing themselves to experience the full spectrum of pleasurable and distressing thoughts and sensations.

Return to the MS Register Hub

How MS affects mood

Patient update: How multiple sclerosis affects mood

I am Professor Dawn Langdon and with Dr Gurpreet Reen, have received a grant from the MS Society to use data from the UK MS Register to investigate mood in multiple sclerosis. We are both psychologists working at Royal Holloway University of London. As you know, people with MS are more likely to experience anxiety and depression than the general population and this affects their lives in a negative way, including employment and how well they manage their disease.

The UK MS Register is a very special set of data because it is collected from people with MS, recording their own experiences. It is also a very large set of data. In order to understand the impact of MS on mood using the UK MS Register data, we needed to identify complete data on mood and other related aspects of people’s lives. These were age, education, employment, disease subtype, physical impact, and psychological impact.

8,812 people with MS (of which 6,397 were female) had entered complete data on all these things. 5,541 had relapsing remitting MS, 2,085 had secondary progressive MS and 1,386 had primary progressive MS. About half of the people with MS reported raised levels of anxiety and also about half reported raised levels of depression. This is similar to other smaller studies which have previously been published.

We were able to use multiple regression, a statistical procedure which evaluates how different variables affect a particular variable of interest. We looked to see which variables were associated with anxiety and depression in MS. We are working on a scientific paper which we will submit to a peer review journal and will provide a more detailed update in due course.

Return to the MS Register Hub

How sedentary is your lifestyle?

In recent years there has been a growing amount of research into sedentary sedentarybehaviour  (large amounts of sitting and little physical exercise). The research is showing that there a many health risks associated with prolonged and excessive inactivity.

The University of Birmingham is working to find out more about the types of activities people with MS do and how these activities are associated with their MS experience.

There is some evidence that interventions to encourage people with MS to move more or sit less can have benefits, but we also know that this can be very difficult to do.  At the moment, we do not know what the most appropriate activities are to advise people with MS to do to achieve these benefits.  Finding out more about the types of activities people with MS do and how these activities are associated with MS experience will help us to develop interventions specifically aimed at people with MS.

The questionnaire will ask you about the activities you do while sitting down and while moving around.  We are asking you about a range of different activities, such as watching tv, household chores, walking, and exercise.  We are interested to hear how often you do these activities.  It can take up to 25 minutes to complete the questionnaires.  With these questionnaires, we are exploring the types of activities people with MS do during a regular day or week.  We are also examining how these activities are related to the way you experience your MS.

We will of course feed back the results to you once they have been analysed!

 

Return to the MS register Hub

Update on Vitamin D questionnaire

 

SunshineLast year we hosted a questionnaire in collaboration with Queen Mary University of London. The study looked  at vitamin D levels in the UK MS population. Vitamin D is one of the top research priorities for people living with MS and results from this study will provide information about the vitamin D status amongst the population.

The last vitamin D sampling kits were sent out just before Christmas. Whether your contribution was through completing the study questionnaire or taking part in the remote sampling part of the study, we really appreciate your help.

We are happy to say that almost two-thirds of the participants who were sent a sampling kit have now returned them to us. For anyone who has received a sampling kit from us earlier this year and not got around to doing your samples, remember – it is not too late! The more samples we get back the better and we will be continuing to collect samples over the next couple months.

Thanks again for your part in this important MS research – we look forward to sharing the results of this study with you in a few months!

Thank you for completing My MS My Needs 3.

The UK MS Register would like to share with you a message from Caroline Howlett of the MS Society’s Research Network…

‘You have spoken! Over 8,000 of you completed this year’s My MS My Needs survey. As a Person with MS and lay member of the Research Network working with the survey team, I’d like to extend a big ‘Thank You’ to you all.

Following on from your hard work, the team are now at the steep cliff face of analysing what this dataset tells us; one that’s large enough to find statistically, meaningful differences between bigger groupings such as regions of the country, but to also look into the findings in smaller, but key equality groupings of ethnic minorities and sexual orientation.

As a result, the MS Society will be able to track changes with the previous two studies’ results, likewise to see what issues remain of primary concern to us. Your time spent completing the detailed questionnaire will help make a real difference: Future Society policies will be shaped, as will campaign priorities.’

As the impact of these findings is realised, we at the UK MS Register will keep you updated. Thank you for your participation!

 

Association of British Neurologists (ABN) Annual Meeting 2019 Posters

The UK MS Register is constantly evolving in a bid to improve and expand our online platform for people with MS and our clinical partners.

One important development that the MS Register is working on right now utilises a Natural Language Processing (NLP) computer program. NLP is designed to automatically recognise the text from any scanned document and convert it into digital information, organised into a computer database. The program is called ATEMS (Automatic Text Extraction for Multiple Sclerosis).

It is hoped that such technology could significantly improve the administrative burden on our partnering NHS clinical hospitals and sites. With so many competing priorities for NHS staff we expect this program will vastly reduce the time it takes to upload MS records to the MS Register; a crucial task to enable pioneering research into the condition.

The program is still in its infancy but the concept is already producing impressive results based on a small set of 100 clinical letters. The program’s precision was compared to the accuracy of human annotations of the same letters.

This preliminary work was showcased at the Association of British Neurologist’s (ABN) Annual Meeting at the end of May 2019. More detail about this work can be seen in the abstract poster below…

The other piece of work demonstrated at the ABN event was the improvements that have been implemented into the MS Register website. Launched towards the end of last year, many of you will have already experienced the new-look website.

Since the website re-launch we’ve seen user engagement levels increase, a surge of interest in the research we’re involved in and some excellent user feedback. More about this can be seen in the abstract poster below…

The Annual Meeting of the Association of British Neurologists took place from 21 – 23 May 2019 at the EICC in Edinburgh.

ABN 2019 NLP Poster

ABN 2019 PPI Poster