In April 2020 we shared a research study with members of our Facebook group. The study was conducted by the University of Reading and looked at the impact of Covid-19 on people with multiple sclerosis. Fast forward 12 months and the research is now complete. In this blog Hannah Morris-Bankole and Aileen Ho, who conducted the study, tell us more about the findings.
There have been many reports of increased mental health problems as a result of the Covid-19 pandemic. Having a chronic illness can add yet another risk factor for vulnerability to mental health difficulties at this time. As part of our research into mental health and MS, we wanted to take the opportunity to find out how the pandemic was affecting people with MS. Thank you to everyone who took part.
Mental health problems are more prevalent in people with MS than in the general population and even those with other types of neurological and chronic illnesses. Therefore, it might be expected that the impact of Covid-19 could affect the mental health of people with MS further. On the other hand, it may be that MS patients are already accustomed to dealing with uncertainty as part of their illness. As a result, Covid-19 may be less impactful than expected.
Our recent research suggests that both could be true. In a large sample of people with MS, just under half reported a neutral Covid-19 impact and a small percentage even reported a positive impact.
Anxiety and stress were reported by everyone who stated any level of Covid-19 impact. However, the key factor that distinguished those who reported a negative impact from those who reported a neutral or positive one, was the use of helpful coping strategies that seemed to buffer the negative consequences of Covid-19. Examples of helpful coping strategies included spending extra time with family, getting plenty of rest or using lockdown as an opportunity to start a new hobby.
However, whilst the majority of this sample reported a neutral or positive impact of Covid-19, just over a third reported a negative impact. The most common reason for mental health concern was worry about delays and changes in treatment. People reported being concerned about the potential consequences of treatment delay in relation to the onset of new symptoms, relapse, or progression. Unsurprisingly, people who were experiencing a negative Covid-19 impact were those who reported higher levels of MS related concerns.
We also found that some sub-groups within the MS community were more at risk of the negative impact of Covid-19. In particular, younger people, those with a progressive diagnosis and those with existing psychological symptoms.
We think that it is likely that people with progressive types of MS may rely on physical therapy and those with psychological symptoms may rely on psychological therapy or groups, both of which have been interrupted as a result of Covid-19. Regarding age, it is possible that younger people with MS are more likely to have additional responsibilities to manage on top of their MS, such as caring for children or employment; roles that have also been heavily impacted by the Covid-19 pandemic.
These findings highlight the need to direct support to those people with MS who are particularly vulnerable to the negative effects of Covid-19. By understanding what has worked for some people with MS, we hope to design support that could be targeted to people who are faring less well at this time. The same support may be valuable to people with other neurological conditions too, as the impact of Covid-19 on these people may be similar.
Beyond the psychological impact of Covid-19, people with MS are known to be at high risk of mental health challenges. Unfortunately, the level of psychological support available does not match the need. We aim to bridge this gap by inviting people from the MS community to join us in contributing to the design and testing of an intervention to support the mental health needs of people with MS. If you would like to help with this, you can find out more and complete our survey.
