COVID-19 impact survey yields unexpected findings for individuals with progressive MS

East Hanover, NJ. September 2, 2020. Researchers conducting a large international study of progressive multiple sclerosis (MS) examined the impact of the global outbreak of coronavirus disease 2019 (COVID-19) on their study participants. Compared with pre-COVID baseline assessments, findings from a COVID Impact Survey administered during lockdown showed minimal changes in depression, anxiety, and quality of life, and in the impact of MS symptomatology on activities of daily living.

The article, “The emotional impact of the COVID-19 pandemic on individuals with progressive multiple sclerosis” (doi: 10.1007/s00415-020-10160-7) was published online August 19, 2020 in Journal of Neurology. The article is included in SpringerLink’s COVID collection: https://link.springer.com/article/10.1007/s00415-020-10160-7

The authors are members of the CogEx Research Team, comprised of site investigators from Canada, the United States, Italy, the UK, Denmark, and Belgium. The COVID Impact Survey was administered during the suspension of a randomized clinical trial (RCT) involving 131 participants at 11 sites in the above six countries. The trial’s principal investigator is Anthony Feinstein, MD, PhD, of the University of Toronto.

The COVID pandemic has had substantial impact on the general population, raising concern for populations at increased risk for infection, as well as for detrimental psychological and social effects of quarantine and social distancing requirements. The pause in the RCT provided an opportunity for investigators to assess the impact of the pandemic on the population with progressive MS in real time.

Participants from all sites responded to the COVID Impact Survey while under social restrictions from May 2020 to July 2020. COVID infection was reported by 4% of participants, according to lead author Nancy Chiaravalloti, PhD, director of the Centers for Neuropsychology, Neuroscience and Traumatic Brain Injury at Kessler Foundation. Comparing baseline with COVID assessments revealed minimal changes in depression, anxiety, and quality of life. Impact of MS symptomatology on daily life functions was also minimal, except in the small subset with COVID-19 infection, where the impact was significant.

“Minimal effects were not what we expected to see,” said Dr. Chiaravalloti, noting that the findings were consistent across different continents. “People with progressive MS appeared to have adapted more effectively to the lockdown conditions. Knowing their increased risk, they may have been early adopters of safety precautions, which may have provided a sense of control that countered negative emotional reactions,” she speculated. “They are also accustomed to living with medical uncertainly and social isolation, two major factors that fueled high levels of psychological discomfort in the general population.”

The COVID Impact Survey showed that the majority of participants actively engaged in mental and physical activities during lockdown. “”This is not surprising given that the aim of the RTC was to measure the outcomes of such activities,” Dr. Chiaravalloti reported. “Focusing on elements of a healthy lifestyle may have mediated the negative effects on wellbeing in this group with progressive MS.”

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This research was supported by Multiple Sclerosis Society of Canada grant EGID3185.

Canada has one of the highest rates of multiple sclerosis in the world. On average, 11 Canadians are diagnosed every day. MS is a chronic autoimmune disease of the central nervous system (brain, spinal cord). It is considered an episodic disease meaning that the severity and duration of illness and disability can vary and are often followed by periods of wellness. Most people are diagnosed with MS between the ages of 20 and 49 and the unpredictable effects of the disease will last for the rest of their lives. The MS Society provides information, support and advocacy to people affected by MS, and funds research to find the cause and cure for the disease, bringing us closer to a world free of MS. Please visit mssociety.ca or call 1-800-268-7582 for more information, to get involved, or to support Canadians affected by MS by making a donation.

Kessler Foundation, a major nonprofit organization in the field of disability, is a global leader in rehabilitation research that seeks to improve cognition, mobility and long-term outcomes, including employment, for people with neurological disabilities caused by diseases and injuries of the brain and spinal cord. Kessler Foundation leads the nation in funding innovative programs that expand opportunities for employment for people with disabilities. For more information, visit KesslerFoundation.org.

For more information, or to interview an expert, contact: Carolann Murphy, 973.324.8382, [email protected].