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The FINDeRS-MS study and why it is important for people living with multiple sclerosis...
Multiple sclerosis (MS) is a long-term condition affecting the brain, spinal cord and eyes. About two million people worldwide have MS and it is among the most common disabling neurological diseases in young adults. In MS, the immune system mistakenly destroys the protective coating that surrounds healthy nerves, blocking signals between the brain and the rest of the body. Lasting damage to nerves accumulates, due to processes we do not yet understand, and manifests as disease ‘progression’. Common symptoms include fatigue, pain, reduced vision, weakness, incoordination, muscle spasm, incontinence and problems with memory and thinking.
The effects of MS vary widely between individuals. We do not know why some people experience faster progression and more severe disease than others. At the start of the illness we cannot reliably predict who will develop a severe form. This is an enormous problem: it is very difficult for people with MS to live with this uncertainty and for doctors to know when and what type of treatment to give. Some MS treatments are only mildly effective but stronger treatments can have severe or even fatal side-effects. There is no way to predict who will respond well to MS treatment or who will develop side-effects.
We have spent the past decade developing novel ways to accurately measure the severity of MS. We aim to combine repeated detailed measurements of severity with in-depth biological studies to understand MS progression and patients’ reactions to treatment and to understand why patients vary in their MS severity and treatment response.
Our research needs a large group of people with MS for whom we have 1) a detailed measurement of their symptoms and disabilities at multiple time points and 2) blood samples for biological analysis. We have made great progress towards this target through our ‘TONiC’ study. However, we do not yet have the samples for biological studies.
In FINDeRS-MS, our ambition is to collect and analyse more symptom measurements and blood samples in 5000 people with MS.
This will be the largest cohort measuring MS progression in the world. It will give us an unrivalled ability to investigate biological changes in MS and to discover how therapeutic, physical, emotional and social factors affect disease progression.
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RESEARCH UPDATES
What really affects quality of life in multiple sclerosis?
JUNE 2021
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Results from the Trajectories of Outcome in Neurological Conditions (TONiC) study in MS have just been published – “Quality of life in multiple sclerosis is dominated by fatigue, disability and self-efficacy”.
If you want to read and keep a copy of the paper, until 1 July 2021 you can read or download it for free from this link without any need to register or pay (thank you to Journal of Neurological Sciences):
The analysis uses detailed data from 5695 MSers from around the UK. As well as fatigue, disability and self-efficacy, it looked at spasticity pain, bladder problems and vision in a form of a path model. A model is useful for considering how things relate to one another; it doesn’t just produce a list of all the things that might be important, it tells you whether one factor is more ‘upstream’ and thus may be worth dealing with first.
So what turned out to be key in the list? A lot of clinical teaching would say disability is by far the main driver but that turns out to be wrong (maybe clinicians concentrate on what they can easily assess in their patients). The results are much more interesting:
Fatigue had the largest total effect.
It would have been very easy to underestimate the importance of fatigue because much of its effect was ‘behind the scenes’, acting mainly indirectly through other factors like disability and self-efficacy.
In other words, fatigue does affect quality of life directly, but it also makes disability worse and lessens self-efficacy, and those indirect effects powerfully reduce quality of life. We should be moving fatigue up the priority list for treatment.
After fatigue, the next most powerful factor influencing quality of life for MSers was disability. Not a surprise, but unexpectedly something else was almost equal in effect to disability.
Almost as powerful was self-efficacy. So what is self-efficacy? Your self-efficacy refers to the beliefs that you have about being able to act to deal with your MS to achieve the outcomes you want.
Responding to these findings will require better treatment options for fatigue, and research into ways to enhance self-efficacy. They also show that our understanding of what matters in MS care has to include evident factors like disability, but also invisible issues like fatigue and subtle but pervasive factors like self-efficacy.
The TONiC study is the largest clinician-verified study on quality of life in MS currently running in the world. It is examining the different factors which may influence quality of life to understand how we may improve it. The TONiC study group has fantastic support from sites around the UK.
*This article was authored by The MS Blogger for The MS Blog, available here.
Sexual functioning in multiple sclerosis: Relationships with depression, fatigue and physical function
APRIL 2020
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Thanks to the assistance of our friends at MStranslate, the FINDeRS-MS study group are pleased to be able to share the findings of their most recent paper.
Use of Coping Strategies in MND / ALS:
Association with demographic and disease related characteristics
Dr. Daniela Schlueter