Key takeaway: In the first year of the COVID-19 pandemic (2020), medical and rehabilitation care for people with MS was disrupted. It is not yet clear though how much these disruptions affected the actual health of people with MS. Although MS care was disrupted, it may not have been disrupted more than regular health care services. There is also little information about the extent to which MS management and care has been disrupted from 2021 onwards.
Each heading below provides findings by topic. Unless otherwise stated, these studies reported about different time intervals throughout 2020.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on February 21, 2023.
Access to MS medical services
A survey conducted by iConquerMS on the impact of COVID-19 showed that:
- 64% of survey participants canceled or postponed medical visits
- Women canceled or postponed medical visits at higher rates than men
- 34% of survey participants canceled or postponed a neurologist’s visit
- 17% of survey participants canceled or postponed an MRI
- 77% of survey participants canceled or postponed a non-neurologist medical visit
- 33% of survey participants canceled or postponed a laboratory visit
A National MS Society survey with providers found that:
- Over 50% of MS providers recommended that their patients obtain MRIs less frequently than they did before the pandemic began
- More than 40% of MS providers recommended less frequent laboratory studies
The European Committee for Treatment and Research in MS (ECTRIMS) (Portaccio) conducted a survey of 360 neurologists in Europe and concluded that the pandemic disrupted the standard of MS care. Survey findings included:
- 98% of neurologists who responded said they were restricted in how they provided patient care
- Only 19% of neurologists reported that MRIs were performed regularly
- Only 30% of neurologists said that laboratory tests were performed regularly
- Survey respondents reported that 38% of clinical trials were suspended, 32% of clinical trials were postponed, and 30% of clinical trials continued regularly
Another study (Chen) compared disruptions in care experienced by people with MS to people without MS and found that:
- 38% to 50% of people with MS reported experiencing disruptions in their MS and non-MS medical care.
- Greater proportions of people without MS (68%) reported disruptions to medical care.
- 20% to 33% of people with MS reported disruptions in their mental health care.
MS drug treatment changes
This section looks at the impact of the pandemic on MS drug treatments, often referred to as disease modifying therapies, or “DMTs.” DMTs modify the immune system to treat MS and are different from treatments that address individual symptoms like pain.
- 10% of the iConquerMS survey participants reported making a change to their MS drug treatment type, dose, or dosing schedule due to COVID-19.
- 11% of the iConquerMS survey participants reported experiencing difficulties and delays in accessing MS drug treatments.
- A National MS Society survey with providers reported that more than 80% of MS neurologists believed that COVID-19 may have changed how they prescribed or recommended DMTs.
- A survey of US and Canadian neurologists (Mateen) found that 65% of respondents reported changing DMT prescriptions in some way:
- 49% reported deferring one or more doses of a DMT
- 34% reported changing the dosing interval
- 20% reported changing to home infusions
- 9% reported switching patients to a different DMT
- 8% said they discontinued patients’ DMTs altogether
- In the ECTRIMS survey of 360 neurologists in Europe (Portaccio), 70% of respondents reported that treatment with DMTs was altered in some way.
Telehealth use
- An NMSS survey (Morrison) with providers reported that more than 95% of MS providers used telehealth to some extent to provide patient care.
- A survey of US and Canadian neurologists (Mateen) found telemedicine was adopted at a fast pace.
- The ECTRIMS survey of 360 neurologists in Europe (Portaccio) found that 92% of neurologists who responded used telemedicine either primarily or exclusively.
- Findings from a survey (Chen) about the use of telehealth among people with MS during Sept-October 2020 showed that:
- Higher proportions of people with MS attended telehealth visits than people without MS
- Telehealth visits were most frequently used for mental health care
MS rehabilitation services
The European Rehabilitation in MS (RIMS) network conducted two surveys with MS providers (Brichetto, Kahraman). The findings show that:
- Up to 81% of European rehabilitation services reduced their activity or were closed at the time of the survey (July-September 2020)
- 33.5% of physical therapists reported that aerobic training or conditioning exercises were reduced or unavailable throughout 2020
- Most physical therapists reported that the COVID-19 pandemic affected their regular use of intervention tools or therapeutic approaches throughout 2020
- 27% of physical therapists reported limited use of technologies such as bodyweight supported walking throughout 2020
- 23% of physical therapists reported limited use of computerized postural control training throughout 2020
- 22% of physical therapists reported limited practice with orthotic devices throughout 2020
- 19% of physical therapists reported limited use of biofeedback/electrical stimulators throughout 2020
- 21.9% of physical therapists reported that hydrotherapy sessions were either reduced or unavailable throughout 2020
- 4.9% of the physical therapists reported increased use of relaxation/mind-body techniques (i.e., yoga, tai-chi) throughout 2020
- 14.4% of physical therapists reported an increase in fatigue management programs throughout 2020
- 13.0% of physical therapists reported an increase in activities of daily living training throughout 2020
Quality of life issues
The iConquerMS survey found that the pandemic impacted some quality-of-life measures:
- 4% of women and 2% of men with MS lost their jobs
- People who self-quarantined (37% of participants) were more likely to report that the pandemic had a negative impact on their personal finances, exercise, and diet compared to those who did not self-quarantine.
Another survey (Goverover) compared changes in daily life activities between people with MS and people without MS (in Spring-Fall 2020) and found that:
- Compared to before the pandemic, people with MS engaged in fewer activities of daily living compared to people without MS
- People with MS had lower scores on quality of life compared to people without MS
- The more activities participants reported doing, the higher their quality of life scores
Another study (Stojanov) compared quality of sleep and fatigue pre-pandemic and during the pandemic. They found that:
- People with MS had worse quality of sleep and greater fatigue than people without MS
- Quality of sleep and fatigue was worse during the pandemic compared to pre-pandemic
Physical activity
The European Rehabilitation in MS (RIMS) network fielded a survey in May to July 2021 with 3725 people with MS living in Australia, Belgium, Czech Republic, Ireland, Israel, Italy, Norway, Serbia, Spain, Turkey, and the United Kingdom (Kahraman et al. 2022). The findings showed that:
- Physical activity levels fell from 84% of participants pre-pandemic to 75% during the pandemic
- Activities in physiotherapy centers, gyms, or pools decreased the most
- Walking increased from 27% prepandemic to 33% during the pandemic
- 58% of respondents said they did not use technology to support physical activity during the pandemic
- Of the 42% who used technology to support physical activity, 24% used wearables
Other studies in the United States also show that physical activity levels early in the pandemic likely decreased (Becker et al. 2022).
Sources
iConquerMS
Vogel, A. C., Schmidt, H., Loud, S., McBurney, R., & Mateen, F. J. (2020). Impact of the COVID-19 pandemic on the health care of> 1,000 People living with multiple sclerosis: A cross-sectional study. Multiple sclerosis and related disorders, 46, 102512.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7501524/
National MS Society
Morrison EH, Michtich K, Hersh CM. How the COVID-19 Pandemic has changed multiple sclerosis clinical practice: Results of a nationwide provider survey. Mult Scler Relat Disord. 2021 Jun;51:102913. doi: 10.1016/j.msard.2021.102913. Epub 2021 Mar 18. PMID: 33839482; PMCID: PMC7969827.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7969827/
Other
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Becker, Heather; Stuifbergen, Alexa K.; Lim, Sungju; Kesler, Shelli R.. Health Promotion, Functional Abilities, and Quality of Life Before and During COVID-19 in People With Multiple Sclerosis. Nursing Research 71(2):p 84-89, 3/4 2022. | DOI: 10.1097/NNR.0000000000000573.
https://pubmed.ncbi.nlm.nih.gov/34967826/ -
Brichetto, G., Tacchino, A., Leocani, L., & Kos, D. (2022). Impact of Covid-19 emergency on rehabilitation services for Multiple Sclerosis: An international RIMS survey. Multiple Sclerosis and Related Disorders, 67, 104179.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9474392/ -
Chen MH, Goverover Y, Botticello A, DeLuca J, Genova HM. Healthcare Disruptions and Use of Telehealth Services Among People With Multiple Sclerosis During the COVID-19 Pandemic. Arch Phys Med Rehabil. 2022 Jul;103(7):1379-1386. doi: 10.1016/j.apmr.2021.12.028. Epub 2022 Jan 31. PMID: 35093328; PMCID: PMC8801263.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8801263/ Goverover, Y., Chen, M. H., Botticello, A., Voelbel, G. T., Kim, G., DeLuca, J., & Genova, H. M. (2022). Relationships between changes in daily occupations and health-related quality of life in persons with multiple sclerosis during the COVID-19 pandemic. Multiple Sclerosis and Related Disorders, 57, 103339.
https://www.msard-journal.com/article/S2211-0348(21)00606-4/fulltext-
Kahraman T, Rasova K, Jonsdottir J, Medina CS, Kos D, Coote S, Tacchino A, Smedal T, Arntzen EC, Quinn G, Learmonth Y, Pedulla L, Moumdjian L, Kalron A. The impact of the COVID-19 pandemic on physical therapy practice for people with multiple sclerosis: A multicenter survey study of the RIMS network. Mult Scler Relat Disord. 2022 Jun;62:103799. doi: 10.1016/j.msard.2022.103799. Epub 2022 Apr 10. PMID: 35428030; PMCID: PMC8994702.
https://www.msard-journal.com/article/S2211-0348(22)00684-8/pdf -
Mateen, F.J., Rezaei, S., Alakel, N. et al. Impact of COVID-19 on U.S. and Canadian neurologists’ therapeutic approach to multiple sclerosis: a survey of knowledge, attitudes, and practices. J Neurol 267, 3467–3475 (2020).
https://doi.org/10.1007/s00415-020-10045-9 -
Portaccio, E., Fonderico, M., Hemmer, B., Derfuss, T., Stankoff, B., Selmaj, K., ... & Amato, M. P. (2022). Impact of COVID-19 on multiple sclerosis care and management: Results from the European Committee for Treatment and Research in Multiple Sclerosis survey. Multiple Sclerosis Journal, 28(1), 132-138.
https://pubmed.ncbi.nlm.nih.gov/33764197/ -
Stojanov, A., Vojinovic, S., Stojanov, J., Malobabic, M., Stevic, M., Milosevic, V., & Stanojevic, G. (2021). Quality of sleep and fatigue in patients with the relapsing-remitting multiple sclerosis during the coronavirus disease-2019 pandemic. Clinical Neurology and Neurosurgery, 205, 106640.
https://pubmed.ncbi.nlm.nih.gov/33901751/