The impact of COVID-19 on people living with MS: what the data says

The impact of the coronavirus pandemic has been extensive, pervasive, and for some, extreme in terms of both lifestyle and health. Routine health services have been reduced, curtailed, or halted entirely, individual lifestyle measures to manage stress and maintain movement have been affected, and 'lockdown' measures have placed additional duress on general mental health.

For people living with multiple sclerosis (MS) these factors have all been in play, with the additional challenge that the disease-modifying treatments (DMTs) that many living with MS use to regulate and control their MS having been affected by the pandemic too. Some DMT use halted or changed under emergency guidance from the Association of British Neurologists in order to keep people as safe as possible, and safety monitoring for DMTs was affected too, due to access and availability of clinics within the drastic changes to the NHS required to control and treat the pandemic.

The demand for information

MS Academy became aware of the anecdotal impact on those with MS through the public-facing webinars held, where individuals living with MS were able to question healthcare professionals and specialists from within the NHS and the voluntary sector during lockdown.

A total of 1,963 live or post-event views across the three patient-facing webinars and the short series of respiratory support videos highlighted the demand for information amongst those living with MS in the UK (table 1).

Table 1: A breakdown of viewing figures for the webinars and videos specifically targeted at viewers living with MS (24 July 2020)

*The most popular video from the Pulmonary pre and rehabilitation series

The survey results

MS Academy ran a short survey amongst those living with MS to find out more detail on the services and support they were receiving during the coronavirus pandemic, and received exactly 100 responses. The questions all pertained to services during the three-month period of British lockdown.

The sample

Of the 100 respondents, 68% were UK-based. 7% were from Europe, 13% were international whilst the remaining 12% chose not to say.

Within that sample, 62% had attended either a telephone or video consultation and 9% a face to face consultation during lockdown and this sample of 71 people is reported on for the majority of the survey analysis. 3% of respondents had had an infusion appointment, which is of note, potentially designating a lower level of access to disease-modifying treatments during lockdown. (These respondents have not been included in the remaining analysis of consultations as the nature of the appointment is very different.)

Of the 100 respondents, only 35 made any recommendations for improvements, and so the percentages reported in that section refer to a sample of 35.

Consultations

79% of respondents discussed COVID-19 as part of their appointment, and 71% discussed their risk of contracting the disease, both in general terms and regarding a more severe form of the disease.

Of those who discussed COVID-19, 74% felt reassured as a result of this discussion. However, only 11% were advised of prehabilitation to reduce their level of risk if infected, highlighting a possible area where practical information could be useful.

Only 11% of people were asked to self-monitor prior to their appointment, and a further 37% were offered advice on self-management at the appointment itself.

Just 6% were given a neurological examination as part of their consultation.

Suggested improvements

When asked if there were any recommendations that respondents would make to improve their consultations specifically, just 35 respondents made suggestions, and those responses were varied, demonstrating the need for individualised care going forward.

Of the 35 who made suggestions, 9% preferred face to face meetings, whilst another 9% would like video consultations and a further 6% advocated for improvement to video-calling applications. Just 3% would opt for a telephone consultation.

17% of people wanted more appointments offered, but the form of these appointments was not specified. With 3% of people seeking telephone clinic improvements, 3% requesting hospital visits be made safer, and 3% wanting appointments with other healthcare professionals, this data confirms that ideally, a range of options across digital and face to face may be preferable going forward.

The most common recommendations were for better advice on managing MS, rather than just COVID-specific advice (23%), improved communication (29%), and offer more support in general (34%). Finally, more standardised and consistent information was also well supported (17%).

Discussion

It is clear from this data that there has been a demand for advice, support and clarification of information amongst people living with MS during the coronavirus pandemic, and MS Academy are just one of many organisations trying to support this need.

Voluntary sector organisations such as shift.MS and the MS Society have also been doing a great deal to support those living with MS, as have the healthcare professionals committed to working with them to optimally manage their MS.

This survey highlights that professionals have worked hard to maintain contact with their patients, with 71 of the 100 respondents having had a consultation in the past 3 months and only 35% of respondents feeling the need to make recommendations for improvements to those consultations. It also highlights that the efforts made in digital communication have been positive, with just 12% of 35 respondents recommending that video or telephone consultations be improved.

However, where recommendations were made, they were for more information around how to best manage their MS, greater general support and better communication. This suggests there are some gaps in how well supported those with MS have felt in spite of this contact.

These findings are supported by the sort of questions being asked during MS Academy webinars, and the needs that shift.MS are seeking to meet, with self-management, maintaining positive mental health, prehabilitation, health and wellbeing, and other general areas of support all popular.

With lower levels of respondents reporting information on self-management, and the likelihood of returning to 'normal' in the imminent future being low, perhaps now is the optimal time to focus on improved support for self-management and a greater 'team' effort between those living with MS and the professionals supporting them.