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
In recent years there has been a growing amount of research into sedentary behaviour (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
Last 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!
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!
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