ABSTRACT
Introduction: The impact of the COVID-19 pandemic on people living with multiple sclerosis (MS) is expected to be significant. Whilst quantitative research in this area has been undertaken, there is a paucity of qualitative research;this study will therefore provide valuable insights into individual experiences and perceptions of people with MS (PwMS) in the United Kingdom (UK) during this unique period. Objective(s): The ongoing global health crisis leaves us all in a state of uncertainty that requires constant adaptation to the new 'normal' we are living in, and it is important that the challenges faced by the MS community are recognised and addressed as part of this learning process. We explore self-reported data gathered during the pandemic to reach conclusions regarding the impact of the crisis on PwMS. Aim(s): To enhance understanding of the experiences of PwMs during the COVID-19 pandemic and identifying potential areas where further support could be beneficial. Method(s): Between March 3 and October 29, 2020, 1,685 free-text comments regarding the unique experiences of PwMS were collected online by the UK MS Register (UKMSR). Thematic analysis of 1,000 randomly selected responses made by 682 individuals was used to investigate the perceived impact of COVID-19 on the participants, following a constructivist approach. Result(s): Five main themes were identified in the data: connectedness, attitudes towards change, mental health, stigma, and information and advice. Results of the thematic analysis were varied, with significant numbers reporting positive experiences of the pandemic. Conclusion(s): Individual levels of connectedness and attitude towards change significantly influence how PwMS experience life during the COVID-19 outbreak. The data showed the impact of COVID-19 on mental health to be mixed among PwMS. The pandemic hashighlighted that some PwMS remain fearful of being stigmatised in the workplace because of their condition.
ABSTRACT
COVID-19 is a concern in people with multiple sclerosis (MS), mostly because of their long-term physical disabilities and immunomodulatory disease-modifying therapies (DMTs). In this community-based pro-spective longitudinal study, we have been monitoring a cohort of people with MS via the web-based platform of the UK MS Register since the start of the COVID-19 outbreak. We report our findings from 17/03/2020 to 15/01/ 2021. Out of 7344 participants, 883 (12%) have reported a selfdiagnosis of COVID-19 of whom 211 had a confirmed clinical or laboratory-based (n=114) diagnosis. No individual DMT increased the likelihood of contracting COVID-19 (with any of the diagnoses as the outcome). Gender (male: female, adjusted OR: 95% CI [0.94: 0.68'1.3]), web-based Expanded Disability Status Scale score (webEDSS;one-point increase, 0.92: 0.84'1.01), and MS duration (one-year increase, 1: 0.98'1.02) were not associated with contracting COVID-19. Younger age (one-year decrease, 1.04: 1.03'1.06), ethnicities other than white (1.95: 1.13'3.34), and relapsing-remitting MS (versus progressive, 1.72: 2.56'1.16) increased the likelihood of contracting COVID-19. Within a median (interquartile range) of 26 (0'72) days follow-up of participants with COVID-19 (n=532), 69% reported full recovery. A higher webEDSS (one-point increase, 0.84: 0.74'0.96) lowered the likelihood of full recovery. Overall, MS-specific factors do not predispose people with MS to contracting COVID-19, but physical disability can delay recovery.
ABSTRACT
The COVID-19 study (clinicaltrials.gov:NCT04354519) is a prospective observational cohort launched on 17 March 2020 as part of the UKMSR. As of 24 April, out of 3910 participants, 237 (6.1% (95% CI 5.3% to 6.8%)) reported self-diagnosed COVID-19 among whom 54 (22.8% (17.5% to 28.2%)) also had a diagnosis by a healthcare professional based on symptoms and 37 (15.6% (11.2% to 20.6%)) a confirmed diagnosis by testing. Three participants reported hospitalisation due to COVID-19. No deaths were reported. Among 1283 siblings without MS, 79 (6.2%) had a reported diagnosis of COVID-19. Adjusting for age and gender, the likelihood of contracting COVID-19 in pwMS was similar to siblings (OR 1.180 (0.888 to 1.569)). Seven hundred and fifty-nine of 3812 participants reported that they were self-isolating and that they had been self-isolating for at least 2 weeks before symptom onset if they had COVID-19. Of these, 2 (0.3% (0% to 0.7%)) had self-diagnosed COVID-19 whereas 137 of 3053 participants not self-isolating (4.5% (3.8% to 5.2%)) had the disease. Participants on DMTs were less likely to have self-diagnosed COVID-19 (OR 0.640 (CI 0.428 to 0.957)), which remained significant after removing self-isolating participants (OR 0.633 (0.402 to 0.998)). High-efficacy DMTs reduced the likelihood of self-diagnosed COVID-19 compared with no DMTs (OR 0.540 (0.311 to 0.938)) but not compared with moderate-efficacy DMTs. Including webEDSS (n=2808) and physical MSIS-29v2 (n=3192) as additional predictors in the analysis showed no significant association with the likelihood of contracting COVID-19. The gender distribution was similar between participants with and without COVID-19. More participants with self-diagnosed COVID-19 reported themselves as having any ethnicity other than white compared with those without the disease (6.9% (3.9% to 10.1%) vs 3.8% (3.2% to 4.4%), p=0.019). Gender and ethnicity did not affect the likelihood of having COVID-19.
ABSTRACT
Introduction: Neurological symptoms of COVID-19 such as fatigue and cognitive and mental health problems constitute the most common long-lasting symptoms of the infection (long COVID) and are also prevalent in MS. Objectives: To assess the prevalence of and factors associated with long COVID in people with MS (pwMS). Aims: To understand how pwMS are affected by long COVID. Methods: This is an ongoing prospective and longitudinal community- based observational study in a national cohort of pwMS who have been reporting whether they have had symptoms suggestive of COVID-19 using the online questionnaire-based platform of the UK MS Register (UKMSR) since 17/03/2020. PwMS with COVID-19 have been regularly followed up to update their recovery status. Here, we report the findings until 19/03/2021. The UKMSR holds demographic and clinical data of registered pwMS and their pre-COVID-19 web-based Expanded Disability Status Scale (web-EDSS) and Hospital Anxiety and Depression Scale (HADS) scores (HADS scores ≥11 were considered as probable anxiety or depression), which allowed us to examine the effects of these variables on recovery from COVID-19 using multivariable Cox regression analysis. The results will be updated prior to ECTRIMS 2021. Results: Out of 1,096 pwMS with COVID-19, 599 updated their recovery status (participants);their median (interquartile range) age was 50 (41-57) years and 462 (77.1%) were women. 458 participants (76.5%) reported full recovery and 141 participants (23.5%) had persistent symptoms at their last follow-up. At least 181 participants (31.1%) had persistent symptoms for ≥4 weeks and 76 (13.1 %) for ≥12 weeks. Participants with higher web- EDSS scores (adjusted Hazard Ratio: 95% Confidence Interval, 0.92: 0.86-0.98), participants with anxiety and/or depression (0.70: 0.53-0.92), and women (0.78: 0.63-0.97) were less likely to recover from COVID-19. Taking DMTs was not associated with recovery from COVID-19 (0.92: 0.74-1.14). Conclusion: The prevalence of long COVID in pwMS appears to be higher than the general population (13.3% ≥4 weeks and 2.3% ≥12 weeks), and those with higher levels of pre-COVID-19 neurological impairment or mental health problems are at higher risk of long COVID. We have previously shown that COVID-19 can also lead to MS exacerbations. These observations indicates that pwMS require individualised pathways for the effective management of their post-COVID-19 rehabilitation.
ABSTRACT
BACKGROUND: In March 2020, the United Kingdom Multiple Sclerosis Register (UKMSR) established an electronic case return form, designed collaboratively by MS neurologists, to record data about COVID-19 infections in people with MS (pwMS). OBJECTIVES: Examine how hospital admission and mortality are affected by disability, age and disease modifying treatments (DMTs) in people with Multiple Sclerosis with COVID-19. METHODS: Anonymised data were submitted by clinical teams. Regression models were tested for predictors of hospitalisation and mortality outcomes. Separate analyzes compared the first and second 'waves' of the pandemic. RESULTS: Univariable analysis found hospitalisation and mortality were associated with increasing age, male gender, comorbidities, severe disability, and progressive MS; severe disability showed the highest magnitude of association. Being on a DMT was associated with a small, lower risk. Multivariable analysis found only age and male gender were significant. Post hoc analysis demonstrated that factors were significant for hospitalisation but not mortality. In the second wave, hospitalisation and mortality were lower. Separate models of the first and second wave using age and gender found they had a more important role in the second wave. CONCLUSIONS: Features associated with poor outcome in COVID-19 are similar to other populations and being on a DMT was not found to be associated with adverse outcomes, consistent with smaller studies. Once in hospital, no factors were predictive of mortality. Reassuringly, mortality appears lower in the second wave.