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Need for Improving Measurements to Track Fatigue in MS

Federica Picariello, PhD, postdoctoral researcher, psychologist, King's College, London, spoke about fatigue mechanisms in patients with MS based on presentations from the 2022 ECTRIMS Congress.

Cognitive dysfunction is a common, overlooked aspect of multiple sclerosis (MS) and there is a need for tracking measurements for patients with the disease that would enhance the monitoring of cognitive decline. A study recently presented 2022 European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) Congress, from October 26-28, in Amsterdam, the Netherlands, demonstrated how web-based computerized assessments on episodic memory, working memory, executive function, and social cognition, can accurately and remotely assess cognitive domains known to be adversely affected in patients with MS.1

The data was collected online through Cambridge Cognition’s application and recruitment was performed through the platform of Prolific. There were 102 participants recruited, over half of which had self-reported a diagnosis of relapsing-remitting MS. All told, the findings showed significant levels of impairment on all of the cognitive domains assessed in several participants. Overall, the researchers concluded that web-based cognitive assessments can assess cognitive functioning in people with MS remotely.

Lead investigator Federica Picariello, PhD, postdoctoral researcher, psychologist, King's College, London, attended the 2022 ECTRIMS Congress, and sat down with NeurologyLive® to discuss the treatment of fatigue in MS. Additionally, she spoke on the mechanisms for improving this symptom, and the necessary steps going forward.

NeurologyLive®: What do you consider to be the most important aspect of treating fatigue for patients with MS?

Federica Picariello, PhD: Well, we tend to ignore not only the kind of overall structure of fatigue. As a psychologist, I focus on transdiagnostic factors: cognitive, emotional, behavioral factors that perpetuate fatigue over time. In our group we drew a very helpful distinction in relation to factors that precipitate the onset of fatigue. So you have triggers—which in MS or any other long term condition are going to be part of physiological in nature, but then you have perpetuator. These are factors that are modifiable in treatment without pharmacological drugs which is what we focus on. What tends to unfortunately not happen in trials, is that we're not looking at the model holistically. We tend to not really study the pathophysiology of fatigue enough in detail. But also, when we are evaluating trials of non-pharmacological interventions, physiological outcomes are rarely included. Yet, it will be so interesting to look at the whole pathway of how the onset of fatigue is precipitated, and also how it's maintained. When we target the perpetual the perpetuators of fatigue, what happens? Does that also change some of the physiological outcomes? So that's part of an important part of the work and something that is overlooked.

The other thing is, and I think that's going to be very relevant to clinicians and the service that people who work in services with MS patients, is the fact that we often do not consider the mechanisms in practice and services. We often focus on individuals and we want the intervention to be acceptable to them. Equally, we need to consider how the intervention is going to work in routine care, how healthcare professionals are going to interact with it, how they're going to screen for fatigue, how they're going to offer different types of interventions, according to needs. This is something that we tend to overlook so there is this model of fatigue that we need to understand better, but then also this model sits in the system. This is something that we are not really quite doing right at the moment.

How do we start to address some of those underlying mechanisms so that we can improve fatigue?

In terms of getting people motivated to engage in exercise, you have to really tap into what the individual wants. Pharmacological treatments are easier in the sense that you're just popping a pill, but we don't have a magical cure for fatigue, unfortunately. It does require more effort when it comes to providing offering nonpharmacological interventions, more effort from the perspective of the patient. What we need to do is always consider: what is the angle for that individual and what they want to achieve? It's not about reducing fatigue or engaging exercise, but what do they want to do and what do they want to be able to do if they're less tired. I think that's always, in terms of clinical work—when we provide therapy to people with long term conditions will experience fatigue—that's always kind of the main aspect. What do you want to achieve? How would your life look like if you're not experiencing fatigue to this extent?

In terms of improving management fatigue more globally, I think it’s about working together. I think that’s what’s missing. Psychologists, occupational therapists, physiotherapists, we kind of work on one side and neurologists working on the other side, we don't communicate enough. I think what needs to happen in practice is almost like a clear treatment pathway or clear recommendations. The first thing is measuring fatigue in routine care because at the moment that's not actually happening in practice. We're not getting a picture of who needs treatment. According to who needs treatment, we need to have some questions in place to understand what treatment is more suitable for them and that requires both research but also serves as development. That's the long term vision.

What's the impact of fatigue on mental health in patients with MS and does it create an added challenge?

I think the main thing when it comes to mood. The relationship between mood and fatigue is that they're bidirectional, yet separate. I think there's sometimes a misconception and sometimes I feel CBT (cognitive behavioral therapy) is being just offered for everything. There's a lot of misconception around what CBT is, both from the perspective of healthcare professionals and the medical community as well as patients. CBT is a great talking therapy, and it is very effective, but it's a constellation of different techniques, that has an underlying treatment logic model in which the way you think and the way you feel and what you do in response to the thoughts and emotions, will lead you to act in certain ways that can contribute to how you feel. The treatment protocol needs to be tailored to the presenting problem. So CBT for depression and anxiety will be very different to CBT for fatigue. I think sometimes there is that misconception, which is very important to I think and communicate very clearly. We as psychologists need to do that better. For instance, CBT for mood, the focus will be on addressing negative thoughts in relation to the self, the world and others and we call that the negative triad. But this is not relevant for fatigue. Someone with fatigue will experience unhelpful thoughts in relation to activity. When they're not feeling when they're tired, they might think it is a sign that they’re going to have a relapse. Treatment needs to be tailored to those specific thoughts. Also, CBT for fatigue would place a lot of focus on activity: how is someone engaged in activity from day to day? Are they engaging a lot of excessive kind of resting and not doing much? Are they avoiding activity? Or are they doing a lot on a good day, and then nothing at all on a bad day? So those will be very important treatment targets of CBT for fatigue, but not CBT for depression. I think that's something that we really need to clearly set straight in terms of offering this type of treatment.

What do you think is the reason for there being a lack of measurements of fatigue taken from patients with MS?

It's a lack of time, but also, it's a little bit scary to tell someone you're experiencing fatigue, and there's nothing I can do about that. It's also about the confidence from the perspective of healthcare professionals. So having something to offer, because it can be very scary to identify a problem and not be able to offer any treatment for that problem. Also, measurement is very difficult because measurement of fatigue is subjective, it's a very complex and subjective feeling. Although there are so many different questionnaires, some may be better than others, choosing which one would be most appropriate has yet to be determined, I think. There is a lot of work that is ongoing in relation to patient-reported outcomes and standardizing them internationally, which is fantastic. That will be important. I think in terms of screening, there has to be something brief and it's something that patients can fill out before they go into their consultation. It's not something they will be filling out during consultation and we need to have a system in place where someone can follow up according to their score. It might even be that healthcare for a neurologist doesn't mean they necessarily have to offer treatment because they might not have the time and have other priorities.

Transcript edited for clarity. Click here for more coverage of ECTRIMS 2022.

1. Thorp E, Cotter J, Searle A, Cormack F, Cree F. Remote web-based assessment of cognition, mood and fatigue in people with multiple sclerosis. Presented at: 2022 ECTRIMS Congress; October 26-28; Amsterdam, the Netherlands. Poster 491