The emotional impact of the COVID-19 pandemic on individuals with progressive multiple sclerosis

Nancy D Chiaravalloti, Maria Pia Amato, Giampaolo Brichetto, Jeremy Chataway, Ulrik Dalgas, John DeLuca, Cecilia Meza, Nancy B Moore, Peter Feys, Massimo Filippi, Jennifer Freeman, Matilde Inglese, Rob Motl, Maria Assunta Rocca, Brian M Sandroff, Amber Salter, Gary Cutter, Anthony Feinstein, CogEx Research Team, Nancy D Chiaravalloti, Maria Pia Amato, Giampaolo Brichetto, Jeremy Chataway, Ulrik Dalgas, John DeLuca, Cecilia Meza, Nancy B Moore, Peter Feys, Massimo Filippi, Jennifer Freeman, Matilde Inglese, Rob Motl, Maria Assunta Rocca, Brian M Sandroff, Amber Salter, Gary Cutter, Anthony Feinstein, CogEx Research Team

Abstract

Objective: Individuals with pre-existing chronic illness have shown increased anxiety and depression due to COVID-19. Here, we examine the impact of the COVID-19 pandemic on emotional symptomatology and quality of life in individuals with Progressive Multiple Sclerosis (PMS).

Methods: Data were obtained during a randomized clinical trial on rehabilitation taking place at 11 centers in North America and Europe. Participants included 131 individuals with PMS. Study procedures were interrupted in accordance with governmental restrictions as COVID-19 spread. During study closure, a COVID Impact Survey was administered via telephone or email to all participants, along with measures of depressive symptoms, anxiety symptoms, quality of life, and MS symptomatology that were previously administered pre-pandemic.

Results: 4% of respondents reported COVID-19 infection. No significant changes were noted in anxiety, quality of life, or the impact of MS symptomatology on daily life from baseline to lockdown. While total HADS-depression scores increased significantly at follow-up, this did not translate into more participants scoring above the HADS threshold for clinically significant depression. No significant relationships were noted between disease duration, processing speed ability or EDSS, and changes in symptoms of depression or anxiety. Most participants reported the impact of the virus on their psychological well-being, with a little impact on financial well-being. The perceived impact of the pandemic on physical and psychological well-being was correlated with the impact of MS symptomatology on daily life, as well as changes in depression.

Conclusions: Overall, little change was noted in symptoms of depression or anxiety or overall quality of life.

Keywords: Anxiety; COVID-19; Depression; Progressive multiple sclerosis; Quality of life.

Conflict of interest statement

Nancy D. Chiaravalloti is on an Advisory Board for Akili Interactive and is a member of the Editorial Boards of Multiple Sclerosis Journal and Frontiers in NeuroTrauma. Maria Pia Amato received compensation for consulting services and/or speaking activities from Bayer, Biogen Idec, Merck-Serono, Novartis, Roche, Sanofi Genzyme, and Teva Pharmaceutical Industries; and receives research support from Biogen Idec, Merck-Serono, Roche, Pharmaceutical Industries, and Fondazione Italiana Sclerosi Multiplav. Giampaolo Brichetto has no disclosures to report. Jeremy Chataway has received support from the Efficacy and Evaluation (EME) Programme, a Medical Research Council (MRC) and National Institute for Health Research (NIHR) partnership and the Health Technology Assessment (HTA) Programme (NIHR), the UK MS Society, the US National MS Society, and the Rosetrees Trust. He is supported in part by the National Institute for Health Research, University College London Hospitals, Biomedical Research Centre, London, UK. He has been a local principal investigator for commercial trials funded by: Actelion, Biogen, Novartis, and Roche; has received an investigator grant from Novartis; and has taken part in advisory boards/consultancy for Azadyne, Biogen, Celgene, MedDay, Merck, and Roche. Ulrik Dalgas has received research support, travel grants, and/or teaching honorary from Biogen Idec, Merck Serono, Novartis, Bayer Schering, and Sanofi Aventis as well as honoraria from serving on scientific advisory boards of Biogen Idec and Genzyme. John DeLuca is an Associate Editor of the Archives of Physical Medicine and Rehabilitation, and Neuropsychology Review; received compensation for consulting services and/or speaking activities from Biogen Idec, Celgene, MedRhythms, and Novartis; and receives research support from Biogen Idec, National Multiple Sclerosis Society, Consortium of Multiple Sclerosis Centers, and National Institutes of Health. Cecilia Meza has no disclosures to report. Nancy B. Moore has no disclosures to report. Peter Feys is editorial board member of NNR and MSJ, provides consultancy to NeuroCompass and was board of advisory board meetings for BIOGEN. Massimo Filippi is the Editor-in-Chief of the Journal of Neurology; received compensation for consulting services and/or speaking activities from Bayer, Biogen Idec, Merck-Serono, Novartis, Roche, Sanofi Genzyme, Takeda, and Teva Pharmaceutical Industries; and receives research support from Biogen Idec, Merck-Serono, Novartis, Roche, Teva Pharmaceutical Industries, Italian Ministry of Health, Fondazione Italiana Sclerosi Multipla, and ARiSLA (Fondazione Italiana di Ricerca per la SLA). Jennifer Freeman has been awarded research grants from the NIHR, UK. Matilde Inglese is Co-Editor for Controversies for Multiple Sclerosis Journal; received compensation for consulting services and/or speaking activities from Biogen Idec, Merck-Serono, Novartis, Roche, Sanofi Genzyme; and received research support from NIH, NMSS Italian Ministry of Health, Fondazione Italiana Sclerosi Multipla. Robert W. Motl has no disclosures to report. Maria Assunta Rocca received speaker honoraria from Biogen Idec, Novartis, Teva Neurosciences, Merck Serono, Genzyme, Roche, Bayer, and Celgene, and receives research support from the Canadian MS Society and Fondazione Italiana Sclerosi Multipla. Brian Sandroff has no disclosures to report. Amber Salter is a statistical editor for Circulation: Cardiovascular Imaging. Gary Cutter is a member of Data and Safety Monitoring Boards for Astra-Zeneca, Avexis Pharmaceuticals, Biolinerx, Brainstorm Cell Therapeutics, Bristol Meyers Squibb/Celgene, CSL Behring, Galmed Pharmaceuticals, Horizon Pharmaceuticals, Hisun Pharmaceuticals, Mapi Pharmaceuticals Ltd, Merck, Merck/Pfizer, Opko Biologics, OncoImmune, Neurim, Novartis, Ophazyme, Sanofi-Aventis, Reata Pharmaceuticals, Teva pharmaceuticals, VielaBio Inc, Vivus, NHLBI (Protocol Review Committee), and NICHD (OPRU oversight committee). He is on Consulting or Advisory Boards for Biodelivery Sciences International, Biogen, Click Therapeutics, Genzyme, Genentech, GW Pharmaceuticals, Klein-Buendel Incorporated, Medimmune, Medday, Neurogenesis Ltd, Novartis, Osmotica Pharmaceuticals, Perception Neurosciences, Recursion/Cerexis Pharmaceuticals, Roche, and TG Therapeutics. Dr. Cutter is employed by the University of Alabama at Birmingham and President of Pythagoras, Inc. a private consulting company located in Birmingham AL. Anthony Feinstein is on an Advisory Board for Akili Interactive and reports grants from the MS Society of Canada, book royalties from Johns Hopkins University Press, Cambridge University Press, Amadeus Press, and Glitterati Editions, and speaker’s honoraria from Novartis, Biogen, Roche, and Sanofi-Genzyme.

Figures

Fig. 1
Fig. 1
Impact of COVID-19 on psychological well-being (frequency of responses)
Fig. 2
Fig. 2
a Engagement in cognitive activities during lockdown. b. Engagement in physical activities during lockdown

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