Psychological support in Multiple Sclerosis

Hannah Morris-Bankole and Dr Aileen Ho on a new survey; now with an update (April 2021).

Mental health problems occur more often in people with Multiple Sclerosis (MS) than the general population. Furthermore, they occur more often in people with MS than any other neurological or chronic condition. It is not known whether this is a symptom of MS, or whether it happens as a result of the symptoms common to people with MS have that can impact so profoundly on daily life, such as fatigue, pain and mobility difficulties alongside the unpredictable nature of the condition. Either way, it is not unusual for people with MS to suffer from some sort of mental health problem, more commonly depression and anxiety related conditions. 

It is for this reason that supporting people with MS in relation to their mental health is of utmost importance to lessen the impact of their MS and improve their functioning physically, psychologically and socially. A number of different psychological interventions have been tried and tested, targeting a variety of outcomes, and are recognised by NICE as something that should form a part of routine care for people with MS.  

Perceived stress, certain coping strategies and uncertainty have been consistently related to poorer psychological well-being in people with MS. Other factors related to wellbeing in MS include social support, thinking errors regarding illness and symptoms and health behaviours as well as positive factors such as finding strengths and benefits in times of adversity. 

All of these factors are amenable to change through intervention. Psychological interventions for people with MS have been designed using a variety of approaches (changing or accepting thoughts or relationships with thoughts, emotions or behaviour), targeting different symptoms and outcomes (fatigue, stress, anxiety, depression) and have been delivered in a number of different ways (both in groups and individually and remotely and face to face), by different facilitators (peers, nurses, psychologists and therapists) for varying durations (from a single session, to ongoing over the course of a year) for people at different stages of their diagnosis. Results have been promising for varying combinations of these factors although no one approach has been identified as the most effective. In fact, it is concluded that most likely different types of intervention are more effective for different types of people and due to the diversity in the MS population, such interventions should be individualised and delivered through a means of person centred treatment that is based on individual needs. 

This is what the psychological literature says, but we want to know what people with MS say. Complete this online survey here by clicking the ‘start’ button at the bottom of the page. https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/

Or you can go directly to the survey here: https://forms.gle/5YTssp4pDVFciYEe9

Hannah Morris-Bankole and Dr Aileen Ho
University of Reading

Update, 28/4/21: 

We know that having a neurological illness such as Multiple Sclerosis (MS) makes you more vulnerable to poor mental health. So, what happens when a global pandemic hits and reshapes the way we all live our lives? 

As part of a wider study looking at mental health in neurological illness, we asked more than 300 MS patients around the world about their experiences of the pandemic. We received a wide-ranging responses, including: 

“Disabled people are being abandonned, treatments suspended, psychological needs being ignored.”

“Stress is not the best for MS. I have had several relapses during this pandemic.”

“… I've been very isolated and feeling lonely a lot of the time. It's also given me too much time to think about  where my MS is going.”

“ … the way people are living their lives because of the coronavirus is much how I have lived for years now. What is extremely disheartening though, is seeing how much people are having problems living a life that I have lived for a while. Makes me dislike my life even more now.”

“I try not to think about it. Just taking care of myself like I always do.” 

“I have tried to replace the things we can't do with the things we can do.”

Overall, we found that there were two main types of impact from the recent covid-19 pandemic and its repercussions. Patients generally reported either an overall negative impact (36%), or a neutral impact (48%). 

We were curious to see if there are certain factors that determined whether MS individuals fell into the negative or neutral impact group. Using our dataset, it was not previous antidepressant medication use, or time since disease diagnosis; neither was it gender, location, living arrangements or employment status. 

Instead, we found that those who were most vulnerable to experiencing a negative impact were those who were younger, had progressive MS and pre-existing mental health symptoms. We need to be more aware that these patients need more targeted support.

The negative impact group had more concerns and these were mainly grouped around anxiety, sadness, loss, coping, fatigue, lifestyle change, life goal impact and relationship impact. They also had significantly higher levels of concern regarding these matters than both the neutral and positive groups which were similar to each other. 

The most common reasons for reporting a negative impact were mental health related concerns such as worries about delays and changes in treatment and the potential consequences of this such as onset of new symptoms, relapse, or disease progression. 

So were the neutral impact group free from worrying concerns? No, we found that this group too were concerned about their ability to function and conduct their daily lives. In fact, they were as concerned about this as the negative impact group, and also significantly more so than the positive impact group.

Was the small positive impact group entirely free from worrying concerns then? No, again. The positive group also had high levels of concern, in fact as high as the negative impact group, about the uncertainty and lack of control in their lives and also about the progression of their MS.

While it may be unsurprising that the most negatively affected group had the most concerns, and at the highest levels, it’s important to remember that the neutral and positive impact groups, were not entirely free of concerns either. This suggests that the widespread additional health concerns of those living with MS during the covid pandemic should be recognised and there is a need for structural change within the health care system to seek to address these. 

Together with this, we have also seen that patients demonstrate immense tenacity and strength in the midst of the compounding and adverse circumstances of chronic disease as well as covid. They draw on helpful strategies to cope with many challenges, and this can act as a buffer to temper the full negative impact of these worrying concerns. 

Patients have found that helpful strategies involved making the most of the situation where possible, and actively taking control where possible – for example seeking information, building supportive social connections despite restrictions, and taking care to rest and care for yourself.

Another useful strategy is about adapting to and being reconciled to the current situation and taking it in your stride. This internally-focussed strategy is particularly important when dealing with things that can’t be easily changed. Both strategies are important and play a role in mitigating the negative impacts of MS especially in the context of Covid.

This work is part of ongoing work in understanding how people with MS have sought and used various types of support including psychological support. This study (link below) is currently open and we would welcome input from people living with MS. 

https://research.reading.ac.uk/neurodegenerative-diseases/multiple-sclerosis/

Read more in The Covid-19 Experience in Multiple Sclerosis: The Good, the Bad and the Neutral.

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