Never too late to quit smoking for people with Multiple Sclerosis

New research finds that quitting smoking may cause slowing of Multiple Sclerosis (MS) disease progression. 

We all know that smoking is bad for a person’s health, and previous studies have shown that smoking can make MS Symptoms worse. This research, which is the largest independent investigation into smoking and MS verifies this – smoking causes real disability progression and mood worsening for people with MS. However, it also shows that when people stop smoking, that worsening stops as well. 

This research is timely as October is #stoptober which is a major annual event to encourage smokers to quit for 28 days, with the aim of stopping smoking permanently. 

Published in the neuroscience journal, Brain, the research was carried out on data from the UK MS Register which is one of the Centres of Excellence of Population Data Science, Swansea University Medical School. It was also presented at this year’s virtual European MS Conference ‘ECTRIMS’ on the 14th October. 

Thanks to the dedicated contribution of people with MS who answer questionnaires on the MS Register, an online web portal which collects data about their MS and lifestyles, the study was able to look at the responses of 7983 people with MS.  Around 4000 people had never smoked, there were 1315 current and around 2815 former smokers. Researchers compared how the scores to the questionnaires changed over time, with people’s current or previous smoking status. 

Dr Jeff Rodgers, who led the research, explained that the study confirms the rate of smoking in people with MS is on par with national rates. This suggests that people with MS may not be receiving sufficient encouragement and support to stop. When comparing the self-reported smoking rates and the data received from doctors, the rates reported were higher from the people filling in the questionnaires themselves. This could partly explain why people with MS might not be given advice about stopping smoking – because the healthcare professionals are potentially unaware of their smoking status. In addition, this highlights the value of collecting data via self-reported methods. 

Dr Jeff Rodgers, Lead Analyst on the MS Register Project said “We have been able to show that smoking causes real disability progression and mood worsening in people with MS. However, we also show that when people stop smoking, that worsening stops as well. This is a very important and hopeful message to people with MS”

Professor Richard Nicholas, Consultant Neurologist and Clinical Lead for the UK MS Register, says: “By using the UK MS Register we were able to speak to over 7000 people living with MS. This allowed us to gain invaluable insights into the impact of smoking on MS, and helped us determine that it is never too late for someone with the condition to quit.

Giving up smoking will have a positive effect on MS progression, but I do understand it can be incredibly challenging to stop. As MS specialists, we must continue to make sure our patients have all the facts about the damage smoking can cause and, crucially, where people can go for vital support to help them stop.”

For more information on smoking and MS visit: https://www.mssociety.org.uk/care-and-support/everyday-living/smoking-and-ms 

Researchers at Cardiff University are looking at the impact of health conditions on the quality of life of family members

The lives of partners and family members are often affected by a person’s health condition,,  including MS. Although family members caring for or living with a patient may experience equal or sometimes even more impact on their life quality than the patient themselves,, the wider family burden of disease has been largely unrecognised or ignored. The researchers at Cardiff University believe that if they can measure this impact, this data can be used to target support where needed and can be used as additional outcome data in the assessment of novel therapies or management strategies. 

The researchers have created a simple questionnaire to measure this impact, the Family Reported Outcome Measure (FROM-16) in 2014. The FROM-16 is a family quality of life (QoL) questionnaire which measures the impact of a person’s health condition on the QoL of the family member or a partner. It comprises 16 items. The lowest possible score is 0, and the highest is 32. The higher the total score, the greater the negative impact on the family member’s QoL. 

Although a higher score of FROM-16 indicates a greater impact on family members’ QoL, for this questionnaire to be useful in a clinical or research setting, there is a need for the scores to have some practical meaning. Descriptive score banding, therefore, gives vital meanings to absolute scores. The cut-off points that would result from the development of score bands for FROM-16 would make it easier for clinicians to identify at-risk and high-risk family members and direct them to the appropriate support services. Besides, while the development of ways to calculate carer and /or family member impact is encouraged by the National Institute for Health and Care Excellence (NICE), the gap in the availability of such measures is a significant limitation to the inclusion of disease impact on carers and family members in economic evaluations of medical intervention.  

The researchers are currently conducting a study to develop score bands for FROM-16 scores, which will help clinicians know what the different scores mean so that partners and family members can be given the right kind of support. The researchers are also trying to use the FROM-16 questionnaire to understand the wider impact of a health condition and develop the way to use the FROM -16 questionnaire in health economic evaluation of medical intervention taking family member’s QoL into consideration in addition to the patients’.  The researchers plan study outcomes to be published in a reputable peer-reviewed journal and websites of patient support groups to have the right influence on policy and practice promoting the clinical use of FROM-16.  

The study is looking for the family members of people with chronic conditions aged at least 18 years to answer a short online survey that takes 5-minutes. If you know someone in your family that might be able to answer, please click here for more information: https://cardiff.onlinesurveys.ac.uk/measuring-the-family-impact-of-a-persons-health-condition-ms

How employers can support people with multiple sclerosis to stay in employment

By Dr Elizabeth Goodwin, Health Economics, University of Exeter

Researchers from the University of Exeter have worked with the UK Multiple Sclerosis Register to explore how people with MS make decisions about their working lives. In December 2017, 2350 members of the MS Register completed a survey that asked them to imagine choosing between two jobs. The results have now been published and they provide interesting insights into how employers can support people with MS who want to stay in employment.

We wanted to investigate the factors that influence the decisions that people with MS make about their working lives. This seems important because people with MS report higher rates of unemployment, higher rates of part-time working, and lower incomes, compared to the general population. Previous research has shown that paid employment can have a positive impact on people’s wellbeing. However, not everyone with MS who wants to stay in employment is able to do so. We were interested in factors that employers could change, making it easier for people with MS to make the decisions that are right for them as individuals.

We used the results of previous research studies to produce a list of factors that influence the decisions that people with MS make about whether to stay in work or leave, reduce their hours or change jobs. We then worked with a group of people with MS to select the five most important factors from this list. By choosing a small number of factors, we could use them in a type of survey called a Discrete Choice Experiment. The results from this type of survey show which factors have the greatest impact on people’s decisions.

The factors that the group of people with MS chose with us were: 

In the survey, members of the MS Register were shown two jobs, which were described using the factors shown above. They were asked to choose which of the two jobs they would prefer.

The graph below shows the results of the survey. We found that the most important factor was the impact that working had on other aspects of people’s lives. Among the factors that employers could do something about, the most important was workplace culture, ie having understanding and supportive managers and colleagues. The least important was the availability of physical adaptations in the workplace.

The graph above shows the results for everyone who took part in the survey. However, we also found that the whole group could be divided into three smaller groups, each of which had a different view of how important they thought each factor was. This seemed to be connected to the type of job (managerial/professional or intermediate/manual) and the type of MS (relapsing-remitting or progressive) that people had.

These results suggest that employers should focus on learning about the effects of MS on people’s lives and work, and on developing and maintaining a workplace culture in which people with MS feel supported by managers and colleagues. A ‘one size fits all’ approach is not helpful for supporting people with MS in their working lives. Managers need to listen to employees with MS, in order to understand their needs and meet them in a way that suits the individual. This involves thinking about the physical and mental demands of the job, and how these relate to the symptoms and the type of MS experienced by the employee, in order to ensure that the support offered is relevant. For example, physically-focused adaptations may be a high priority for jobs that are physically demanding and for people with physical limitations, whereas greater flexibility may be more important for mentally demanding jobs and for people with relapsing-remitting MS.

This study sheds light on the factors that influence the decisions of people with MS about their employment and the support required for them to remain employed, and shows how much this varies between individual people with MS. We hope that these findings will help to inform employers and policy-makers about the steps that they could take to enable people with MS to remain in the workforce for longer if they choose to do so.

You can read the published article about this study by clicking on the link below:

http://link.springer.com/article/10.1007/s10926-020-09952-5

What you told us: Covid-19

Since March 2020 have been asking our participants about their experiences in the pandemic. We have had an overwhelming response and wanted to share back the research that your answers have generated.

In this short video we explain what we collected and when and then tell you about the research that this has fed in to.

We hope you enjoy the video, please like, comment and subscribe!

A lecture from the MS Society


A free lecture as part of the MS Society’s Stop MS Appeal will take place virtually on Wednesday 2 June from 6.30pm. The lecture is for anyone who is keen to find out about research the MS Society is funding and also the new exciting trial that could transform the way treatments for Progressive MS are tested. 

The Stop MS Appeal

Everyone diagnosed with MS knows that their condition is likely to progress, potentially impacting their ability to simply walk, talk, think, eat or see. For those with the primary or secondary progressive stages of MS, it is currently impossible to repair the damage once it’s been done. 

Put simply, the Stop MS Appeal aims to raise £100 million to find treatments for every single person with MS. Today, in 2020, we have treatments that can reduce relapses and slow the worsening of disability in relapsing forms of MS. But that is not enough. We want to stop MS in its tracks, and halt progression, for everyone. 

We don’t have to imagine a future where nobody needs to worry about their MS getting worse, we can see it. And a major strategic investment could unlock breakthroughs that are on the horizon. By 2025 we plan to be in the final stages of testing a range of treatments for everyone with MS.

The Lecture 

We are excited to announce that the lecture will be presented by Professor Jeremy Chataway, National Hospital for Neurology and Neurosurgery and UCL Queen Square Institute of Neurology, and Professor Max Parmar, Director of the MRC Clinical Trials Unit at UCL, lead investigators of our ground-breaking new multi-arm, multi-stage trial, Octopus, that will transform the way we test treatments for progressive MS.

Join Professors Chataway and Parmar as they explain our Octopus journey so far – from bringing together experts from different fields to plan the trial, developing Octopus’ revolutionary design and getting the trial ready to open to participants later this year.

After the lecture, there will be a Q&A panel session with our esteemed Stop MS Scientific Ambassadors, where guests will be invited to ask any questions they may have.

Interested?

You can register to attend here: https://stopmslecture.eventbrite.co.uk (please note, places are limited.)

For more information please contact Hettie.tetteh@mssociety.org.uk.

Fatigue and MS

Maggie, a participant on the MS Register recently reviewed a scientific paper for us. It was published in ‘Multiple Sclerosis and Related Disorders’ and was created in collaboration between Birmingham University and the UK MS Register, looking at Fatigue and MS.

High levels of fatigue were reported by 56.4% of participants

Fatigue is a common problem for MS patients.

How the management of fatigue in MS patients is conducive to a better outcome in the treatment of mental and physical problems affecting day to day living.


Fatigue is a debilitating symptom of MS and is potentially caused by central nervous system lesions and inflammation leading to pain and poor sleep. The side effects of medications may also add to the problem and lead to the general deterioration of the ability to function day to day.

Between September 2016 and May 2018 fatigue was assessed as it affected 3398 participants in the U.K. MS Register questionnaire on the subject. The benefits of having a large number of people willing to answer questions on all aspects of their health in relation to fatigue are apparent and show how the U.K. MS Register can help the relevant professionals in their research into MS.

The study aimed to examine differences between personal experiences of fatigue in MS patients, who provided information to the U.K. MS Register and answered questions for the Fatigue Severity Scale. high levels of fatigue were reported by 56.4% of participants and higher levels of fatigue were associated with higher levels of anxiety and depression among other variables. 69.5% of the participants were female and 56% had Relapsing Remitting MS. 56.4% of the respondents experienced high levels of fatigue. Fatigue affects the quality of life in many MS patients and influences walking ability and the ability to do household tasks. It causes depression and anxiety and mood disorders. Like many MS problems, fatigue is not a visible symptom of itself. It is reflected in the problems which are visible to others, but the effect is often exacerbated by the impression that the patient is not trying hard enough, a common problem which leads to mood swings and anxiety and a draining depressive state. A reduction in social interaction and participation is also a result of fatigue.

The study posits that a personal intervention tailored to a patient’s specific needs would have positive health benefits. Some patients would respond well to an exercise programme, others to psychological support.




About me

My name is Maggie and I have Secondary Progressive MS which is thankfully not active at present and has stabilised to a problem with spasticity and some very small problems with brain function no doubt caused by a multitude of brain lesions. Management of fatigue has involved a personal imposition of routine and a determination to keep to that as regards sleep and meal times.

The scientific paper that was used for this report was:
Fatigue and fluctuations in physical and psychological wellbeing in people with multiple sclerosis: A longitudinal study.
By Jet Veldhuijzen van Zanten , Michael R Douglas, Nikos Ntoumanis  https://pubmed.ncbi.nlm.nih.gov/33176231/


Monitor your MS and share with your health care team

See your Feedback on the MS Register.

On the ‘My Profile’ page make sure you have choosen the option to ‘see my feedback’

Then on ‘my Hub’ page you will see ‘My feedback report’ on the the top right.

You can down load it to a pdf and print or send it to your Health care team if you need to.

 

Update for Fatigue and Physical Function Study

First of all, a big thank you for your participation in the Merck study, and for sticking around for the last few months until now!

As we get into the final phase of data collection, we thought of sharing some important updates about the study with you.

  • First, this study has made an enormous contribution to research into new MS treatments. The two new questionnaires developed and tested in this research are now included in two Phase III multiple sclerosis trials – EVOLUTION I & II. Specifically, fatigue symptoms and physical function are being assessed in these trials as “secondary endpoints”, based on the new questionnaires.
  • Second, Merck’s collaboration with other companies and health authorities responsible for approving new medicines in the US – the FDA, through the Critical Path Institute PRO Consortium, continues. Specifically, this initiative is seeking to get the two new questionnaires (fatigue and physical function) to be accepted and approved by the authorities as standard clinical trial outcomes. This would encourage other companies and research to evaluate how treatments directly impact fatigue and physical function, which represent outcomes that are important for people with MS.  In June 2020, the consortium received new funding from the FDA to fast-track work focusing on the PROMIS physical function questionnaire.
  • Further, we continue to present results from this work at various scientific and international conferences. We are particularly excited to be presenting at the European Committee For Treatment and Research in Multiple Sclerosis (ECTRIMs) Annual Congress this September. This is the world’s largest professional organization dedicated to the understanding and treatment of Multiple Sclerosis. Of course, we’ll be sharing with you the posters and links in due course.
  • Finally, with the current study winding up this autumn, we are already back to the drawing board to design and plan further research, to be initiated in the near future. Watch this space.
  • I hope you and your family stay safe in these unusual times.

 

MS and Mood during the COVID-19 pandemic

Researchers from the Nottingham MS Research Group are working with colleagues at Imperial College London, Swansea University and the UK Multiple Sclerosis Register to examine the effect of COVID-19 on people living with MS.

The project includes a sub-study to explore how COVID-19 is affecting the mood and psychological wellbeing of people with MS. This is important because this kind of pandemic, and the associated loneliness caused by isolation, can lead to future mental health problems for many. As it is acknowledged that high levels of mood problems can be associated with MS relapses, the research teams want to urgently track people’s mood, and find ways of helping them deal with these problems.

While during the initial few months of the COVID-19 pandemic, much research attention focussed on the physical aspects of the disease, with the advent of the lockdown and all its consequences, it became clear to us as clinicians and researchers that people’s mental health was likely to be affected. Therefore, our study was put together very quickly to understand how people with MS were experiencing life during the pandemic in terms of their mood and their lifestyle.

The MS-COVID-19 psychological wellbeing study focuses on (i) mood (anxiety, depression, and trauma), (ii) lifestyle issues (how people’s diet, exercise, alcohol consumption and smoking behaviours had changed over the course of the pandemic), (iii) work issues, and (iv) social support. We have over 1800 people with MS complete the survey so far, and we would like more people to tell us how they have been feeling. If you have MS, please click here to log on and complete the questionnaire: ukmsregister.org/login 

To make sense of our data, we are also reaching out to the general public (who do not have MS) to complete the same questionnaire, so that we can look for similarities and differences in how those with and without MS are experiencing life during the pandemic. We would like to urge people without MS to complete our brief questionnaire, by following this link: https://redcap.ukmsregister.org/surveys/?s=HX3HPMRJLP 

 

COVID-19 and MS

The MS register and the MS Society are asking people with MS to tell us more about the impact the current coronavirus pandemic is having on their lives. Over 3,500 of you have already completed a survey asking some questions about your treatment and changes you may be making to your behaviour. We would also like to know about how you are feeling within yourself, the impact on your employment, finances, and access to appropriate care and support. As well as asking what support you might need right now.

Answers you provide to this survey will help us continue to make the case with the government and NHS for crucial care and support for our community. Over these past weeks we have been in constant communication with our medical advisors, government officials, other charities and decision makers to ensure that the needs and voices of people with MS are considered. We have been working hard to ensure that people can get the food, medications, care and financial support they need, and that the information people with MS are receiving is clear and relevant. We continue to work hard to ensure the best possible outcome for people with MS. What you tell us through this survey will give us crucial information to do so.

We also want to make sure that we are providing the information, services and support that you need at this time. You may be at home but you are never alone. Calls to our helpline have been up over the past few weeks while our community works out what the new situation means to them. Although our in-person events have been paused for the moment, we have introduced a number of virtual services and events. We have been doing weekly webinars on managing your MS. We have also introduced a ‘keeping in touch’ service to ensure people who would like social contact can receive regular phone calls – just to chat. As always, we want to make sure that the services we are providing are relevant to what you need right now. By filling out this survey you are helping us stay in touch with the needs of our community, and continue to provide those services and support that are needed.

People with MS in the UK are providing vital information on Covid-19

The MS Society is looking for people with multiple sclerosis (MS) to provide vital information through the UK MS Register on how coronavirus is affecting them.

MS damages nerves in the body and makes it harder to do everyday things, like walk, talk, eat and think. Having MS alone does not increase your risk of getting Covid-19, but many people with MS are at an increased risk of infection, or severe complications.

Thousands with the condition are classified as extremely vulnerable, and have been asked by the Government to self-isolate for a period of 12 weeks.

The UK MS Register team have put out a first – ‘baseline’ questionnaire on Coronavirus (COVID-19) and MS to collect data on how coronavirus is affecting People with MS (PwMS), and to learn if people on Disease Modifying Treatments (DMT) are really more susceptible, what advice should be given and to drive future recommendations.

The team is also trying to capture how PwMS feel about the current situation, to understand what sort of information and support PwMS have been given, and if behaviour has changed as a consequence. The type of information provided by PwMS could help the way COVID-19 is dealt with, and inform how future pandemics may be approached.

Rod Middleton, Programme Manager of the UK MS Register at Swansea University Medical School, said: This study is important for people with MS so that we can understand how pandemics like this can affect them and hopefully learn how to manage this for the future. The Register has a unique ability to model many of these factors as we have longitudinal data from PwMS in some cases going back 8 years. We can see in great detail how new factors impact on all aspects of peoples MS, their quality of life, fatigue and mood.

Dr Susan Kohlhaas, Director of Research and External Relations at the MS Society, said: “More than 130,000 people live with MS in the UK, and we are asking every one of them to join this study to help us understand more about Covid-19. There’s so much we don’t know about this virus and only real world data will help us change that.

“This is a worrying and uncertain time for all of us, but many people living with MS are especially vulnerable, and this study will allow us to support them as best we can.

During the first 24 hours alone, 1,174 people with MS completed the questionnaire – including 11 with potential cases of coronavirus – but more people are needed to help researchers fully understand the virus and its impact.”

Professor Richard Nicholas is co-leading the study, which is run by the UK MS Register. He says: “MS is unpredictable and different for everyone, and we understand some people are at greater risk from coronavirus than others – such as those who are taking MS treatments that lower the immune system. But all the current advice is based on our understanding of how treatments work, and we urgently need more data to establish the facts. For example, we anticipate there could be some treatments that actually lower a person’s risk level of contracting the virus, but can only confirm this through research.

“This simple online survey can help us identify when and how symptoms of Covid-19 occur in people with MS, so we can provide the best possible guidance on treatment and better support for them in the future.”

Responses also reveal changes in behaviour in response to Covid-19, and indicate that 90% of people with MS in the UK are currently in self-isolation.

One reason this research must be conducted now rather than after the crisis has peaked is to avoid the issue of recall bias, where memories are affected by any new information learned about how the virus.

Study co-lead Professor Nikos Evangelou, explains: “As testing becomes more widely available and we know who did and didn’t have the virus, we’ll be able to look back at our findings and determine whether different treatments have a negative or positive impact on the risk of getting Covid-19, or the severity of symptoms. Every response counts.”

The MS Register– an ongoing study based at Swansea University, and funded by the MS Society – will publish regular updates of their results so clinicians and people with MS can benefit from the findings, and make better decisions about treatment throughout the pandemic.

Anelma Beech, 48, lives in North Wales and has relapsing MS. She has signed up to the MS Register study, and says: “I’m isolating at the moment because I’m in the high risk group, and have not been able to see anyone. It’s tough, but while we’re all stuck indoors we can do something really valuable, and tell the experts how coronavirus is affecting us. If we don’t, they can’t do anything about it. And the more information they have the better equipped they’ll be to deal with problems in the future. It’s a scary and uncertain time but this is a really important contribution people with MS can make to help make things a bit clearer.”

To take part, people with MS can visit https://ukmsregister.org.

For the latest information on how people with MS are affected by Covid-19 visit mssociety.org.uk/coronavirus

THE IMPACT OF COVID-19 IN MULTIPLE SCLEROSIS: A SUBSTUDY OF THE UK MS REGISTER

This is the Blog published on the Barts Multiple Sclerosis Research Blog by The UK MS Register Clinical Lead, Dr Richard Nicholas.

We need to understand more about COVID-19 urgently, and you can help.

COVID-19, the coronavirus infection, is devastating the health and jobs of millions around the world, and is now in increasing in the UK with a major impact on all of our lives. People with multiple sclerosis (pwMS) are a susceptible group both due to the impact of the disease but also as a result of taking disease modifying drugs (DMDs).

There are a wide range of DMDs that reduce the ability of the immune system to respond to normal challenges, such as viruses, to varying degrees. Advice has been developed and released all over the world (including this blog) in terms how to respond to the potential immune impairment from DMDs. However, there is fine balance between immune suppression to contain MS and the potential damage that immune suppression might allow. Much of the advice is based on what we know so far about DMDs, but we need to know if this advice is correct.

We need to understand how pwMS are affected, but there are a number of real challenges that we have not as yet resolved:

  • At this moment in time we can only measure if people have an active virus present at the time of the test.
  • We cannot as yet measure if someone has had the infection in the past and has developed an immune response. Hopefully this test will be available in the next month.
  • Currently, we do not have testing kits available in enough numbers to test everyone and in the UK, and at this time, only people admitted to hospital are being tested.

This means that understanding the true numbers of people who get the virus and have no symptoms or mild symptoms is not possible. Therefore, we get a distorted view of the impact of COVID-19 in pwMS as we only know about those who are severely affected. The problem with trying to understand if someone had symptoms once we do know if they had an infection is called ‘recall bias’ – people selectively identify symptoms in retrospect. To get over this problem we need to collect information prospectively that is before people get the virus and as they recover.

This study aims to recruit people now when they are well or if they have recently had the virus, and then follow what happens to them regularly over the next few months. This will enable us to identify when symptoms occur and what their impact is.

Once further testing becomes available, we will be able to understand how many people were truly affected and also determine whether DMDs have a negative or positive impact on the chance of getting the virus and whether they affect the severity of the infection.

To collect these data, we are using the UK MS Register based at Swansea University and funded by the UK MS Society as a platform. The UK MS Register has been running since 2011 and has signed up more than 15,000 pwMS and collects details of each person’s MS and asks them to complete participant reported measures regularly. The UK MS Register works in collaboration with 49 UK National Health Service Trusts with an MS Service around the UK. We need pwMS to register and complete a set of questionnaires and update details of their MS. These questionnaire sets will be repeated every two weeks over the next few months. We also want to contact their clinical team and be able to get the details of their test results when it is eventually done.

Figure 1. Rolling update 07.00 21st March 2020

We will generate rolling updates of these data for pwMS and healthcare professionals to inform and support decision-making about the best decisions about treatment and approach in the context of COVID-19. We have already started collecting data and as of 07:00 on the 21st March 2020, 1818 pwMS have already taken part, but need more people with MS to take part to get useful results – most recent update (Figure 1).

To take part please go to https://ukmsregister.org and sign up to the UK MS Register, or log back in if you are already registered. Every response helps.

Parallel to this survey, we are asking neurologists and MS professionals to report anonymously if any of their patients in their centres had COVID-19. This can also be accessed at https://ukmsregister.org.

By studying the results from the two surveys, we will get a clearer picture of how the pandemic affects people with MS and update COVID-19 guidelines based on real data.

Exciting Updates for The Ongoing Merck Study

In autumn of 2018, we launched a study in collaboration with Merck Healthcare KgaA, which seeks to provide a better understanding of the burden associated with MS symptoms and day-to-day impacts and how best to assess these.

In our September 2019 newsletter/update, we share with you that two new patient-friendly self-assessment questionnaires for fatigue and physical function had been tested and validated. These are already included in planned MS clinical studies, supporting research on new MS therapies.

The Merck study is still ongoing until November 2020, with the 18-month assessment window currently open. As the study continues, the research team has already started with analysis of data. Results from analyses of data collected as of October 2019 were presented at two conferences, the International Society of Quality of Life Research (ISOQOL), and the PROMIS Health Organization (PHO), in San Diego, California, in October 2019.

 

Here are links to the two posters that were presented.

PHO_PROMIS_MS-Fatigue-v2.1-22102019

ISOQOL_PROMIS_MS-PF-v1.0-20102019

As mentioned in our autumn (2019) update, Merck is participating in an initiative, the C-PATH PRO Consortium MS Working Group, alongside other pharmaceutical companies, and other organizations, to standardize assessments of fatigue and physical function in clinical trials used to test new MS therapies. Data from the current study are being used as key evidence supporting discussions with the US Food and Drug Administration (~the government agency responsible for evaluating and approving new drugs in the USA), as part of the initiative. If the initiative is successful, we expect to see an increase in trials including assessments of fatigue and physical function outcomes as important (i.e. secondary) outcomes, based on the new PROMIS questionnaires.

Once again, thank you for your continuous contribution to this important research.

 

Coronavirus (COVID-19) and MS

We understand that you might be feeling worried about the Coronavirus and your MS.

Here is a general information page with plenty of useful links for advice and suggestions here https://www.ukmsregister.org/coronavirus 

We have put a questionnaire on your Hub Page because it is very important to collect data on how Coronavirus is affecting People with MS. Additionally we would like to learn if people on disease modifying treatments are really more susceptible and what advice we should give. We believe that this is a very important study all PwMS should take part to drive future recommendations.

In addition, we are trying to capture how you feel about the situation now, what sort of information and support you have been given, and whether you have changed your behaviour. This type of information could help the way this virus is dealt with and indeed how situations like this are approached in the future.

It is important that as many patients that are currently well fill in in the questionnaire as they will help interpret the results of those feeling unwell.
The following questions will take about 7 minutes to complete. We would also really like you to make sure if you can, that your other details (on the left hand side of the Hub screen) are up to date and accurate. Please check especially that you have recorded any DMT you are currently on and if you have any other illness.

We also want to monitor what is happening with the Coronavirus. We will keep this questionnaire open for you to return to if anything changes, and we will also send email reminders to you to log if something changes. We may also send follow up questionnaires over the course of the next few weeks/months.

We will be reporting back regularly with results to you, the MS clinics and national and international organisations

Thank you for helping us monitor how people with MS are coping with and reacting to the virus.

If you are worried about your MS and the Corona Virus, please contact your GP, Neurologist or MS Team.

If you suspect that you have Coronavirus, please follow the NHS and government advice here https://www.nhs.uk/conditions/coronavirus-covid-19/
If you do get a confirmed diagnosis, please log back in and let us know.

Stay safe everyone

 

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!

Participant Feedback on the MS Register: 1 Year Since Website Relaunch

  1. How long have you been a participant on the MS Register?

Approximately 8 years

  1. How was it you came to be involved with the MS Register?

Advert via Facebook – I think – sorry long time ago now

  1. Why do you feel it’s valuable to contribute data to the MS Register?

I am 100% honest about how my MS affects me.  I don’t feel I am put on the spot or being judged.  If it helps any research – then that can only be a good thing. No needles, poking or prodding in this research,  so happy to answer and be part of this register

  1. Do you find the portal to be a useful, personal tool for your MS?

It is easy to use and it is good to look back at previous answers to see how, if and when things have changed.

  1. Do you have any other positive experiences of the Register that you’d like to share?

It is good to feel as if you may somehow help researchers understand what living with MS is like.

MF, Hampshire

 

  1. How long have you been a participant on the MS Register?

I do not know, I believe ever since the Register started I think

  1. How was it you came to be involved with the MS Register?

I have always followed the MS Society and when the register commenced or as soon as I was invited I accepted that opportunity

  1. Why do you feel it’s valuable to contribute data to the MS Register?

I believe that if I can add or offer anything to aide the research with regard to MS and its cure or symptom relief I would like to do that and always believe in giving something back

  1. Do you find the portal to be a useful, personal tool for your MS?

I find the portal interesting more than useful personally

  1. Do you have any other positive experiences of the Register that you’d like to share?

I have nothing particular to offer. I do believe the questionnaires need to be reviewed more diligently and cross referenced to the various different entities that are looking for the appropriate information and feedback as it does become somewhat repetitive and unnecessary answering the same question in principle a number of times when completing the questionnaires each time.

M. Pearce, Suffolk

 

  1. How long have you been a participant on the MS Register?

I can’t exactly remember how long I’ve been on the MS Register but I guess it’s about 7 years or so.

  1. How was it you came to be involved with the MS Register?

I received an email from the MS Register asking if I would participate. It seemed like a good idea and I’ve been participating ever since.

  1. Why do you feel it’s valuable to contribute data to the MS Register?

Anything that helps research into MS that may eventually make life easier for MS sufferers or even find a cure has to be a good thing. It’s no good burying your head in the sand and let others do it.

  1. Do you find the portal to be a useful, personal tool for your MS?

In a way. I appreciate researchers are looking for one’s experience within a snapshot of time but I feel like I want to say more. I find it a bit frustrating that I can’t expand on the answers. Having said that, having been involved in conducting surveys myself, I realise researchers don’t want people ‘rabbiting’ on. Not only do I have great difficulty walking, I can no longer drive due to MS. After 50 years of driving I find this has taken away yet more of my independence. Maybe the surveys aren’t interested if one can get around outside but it’s all part of living with MS.

  1. Do you have any other positive experiences of the Register that you’d like to share?

Some of the surveys provide results in the form of a graph. I find these particularly useful to compare my well-being from a few months, or years ago.

B. Eaton, Hampshire