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Background The UK MS Register (UKMSR) has been capturing longitudinal clinical and patient reported outcomes (PROs) since 2011. As the UK population 'locked-down' in March 2020 it became important that clinicians could record hospitalised MS patients due to COVID-19 and record outcome. The UKMSR provided an electronic case return form, designed collaboratively by the community. Aim Impacts of disability, age and treatment on mortality in pwMS with COVID-19 Method Linear modelling and standardised hypothesis testing were performed on an outcome of died or not, impact of disability (EDSS), disease modifying therapies and age. Results N=132 PCR confirmed COVID-19 patients submitted, 14 missing EDSS, leaving n=118. Female n=80, n relapsing =74, n progressive = 44, mean age 49.2. Median EDSS = 5.0. Linear regression for age was found to be most significant for outcome (p=0.002). Univariate analysis found that the outcome was not independent of EDSS (ChiSq p=0.0008), DMT (ChiSq p=0.006) and MSType (ChiSq p=0.0006). In the multivariate model only, age remained significant. Conclusions Only age remained as a marker of poor outcome multivariate analysis. No MS Specific characteristics were found to be significant. We would encourage continued data collection from UK neurology centres to increase the utility of this data.
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Introduction Global efforts in vaccine development against SARS-CoV-2 saw the Pfizer-BioNTech vaccine approved for use in the United Kingdom (UK) on 2nd December 2020. There have long been discussions around vaccination in patients with multiple sclerosis (pwMS). We conducted a patient survey as part of the UK MS Register (UKMSR), to understand pwMS views on COVID vaccination. Method PwMS were invited by email to complete a COVID-19 vaccine online questionnaire as part of the UKMSR on 7th December 2020. Results A total of 3092 pwMS completed the survey by 7th January 2021. 69.1% of patients indicated they are definitely going to get a COVID-19 vaccine, 16.1% probably, 9.1% possibly, 3.4% probably not and 2.3% definitely not. Factors examined includes gender, age, highest educational attainment and type of MS. Additionally, we explored whether previous experiences of vaccinations affected attitudes towards COVID vaccination. The top reasons for not taking a COVID vaccine included safety concerns and insufficient information. Conclusion This UKMSR patient survey showed 85.2% of pwMS intend to get vaccinated against SARS-CoV-2, which is higher than the UK general public of 67% (1). More information on vaccine safety in pwMS would be helpful in making informed decisions.
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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.
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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.
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Background: Rapidly worsening symptoms in multiple sclerosis (MS) can be associated with relapses or temporary changes due to systemic disturbances such as an increase in temperature eg Uthoff's phenomena. COVID-19 infections can exacerbate MS symptoms (Garjani, 2021), notably this worsening seems to be ameliorated by disease modifying therapies (DMT). Vaccinations have a long history of issues for people with MS (pwMS) as they have been associated with MS worsening. COVID-19 vaccines were developed rapidly and have been associated with vaccine related side effects that we are continuing to establish Objective: To determine the range of side effects from the AstraZeneca (AZ) and Pfizer (PF) vaccines in pwMS and factors associated with their occurrence Methods: A vaccine survey was deployed to all pwMS on the UK MS Register, which remains accessible to all participants. First dose vaccine type and effects were collected and linked with demographics and prior COVID-19 studies. Control data was derived from a UK-wide observational study focusing on particular matched questions (Menni et al, 2021). Results: As of 23-Mar-21, 388/1154 (34.5%) had vaccine effects with the PF vaccine and significantly more 822 /1408 (58.4%) had vaccine effects from the AZ vaccine (p<0.0001). There was no difference in the rate of severe side effects between the two vaccines (2.4% AZ,1.03% PF). Particular symptoms: fatigue, headaches and fever could be matched with control data. Fatigue: AZ-MS 59.3% v 21.1% controls;PF-MS 47.4% vs 8.4% controls Headaches: AZ-MS 58.3% v 22.8% controls;PF-MS 43.0% vs 7.8% controls Fever: AZ-MS 26.5% v 8.2% controls;PF-MS 11.1% vs 1.5% controls Sensory loss: AZ-MS 7.5%;PF-MS 3.4%. No control comparison. Logistic regression for the presence of vaccine effects (vs none) was associated with younger age (0.97 [0.96, 0.98], (<0.0001): odds ratio [95%CI], p), female gender (0.56 [0.45, 0.70], (<0.0001), prior COVID-19 infection (1.98 [1.24, 3.21], 0.0049) and the AZ vaccine (2.93 [2.45, 3.51], < 0.0001). Notably being on a DMT, higher disability and progressive MS were not significant. No factors were associated with severe reactions. Conclusion: In MS, as in other studies vaccine effects are more prominent in the AZ group compared to PF but there is no difference in severe vaccine effects. Systemic symptoms fever, headaches and fatigue are more common in MS than in a control population with associated increases in sensory symptoms.
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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.
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COVID-19 , Multiple Sclerosis , Humans , Male , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , Pandemics , Patient Reported Outcome Measures , SARS-CoV-2ABSTRACT
Objective: To assess factors associated with recovery from the coronavirus disease 2019 (COVID-19) among people with multiple sclerosis (pwMS) Background: It is important to understand the recovery process from COVID-19 among pwMS to identify those who are most vulnerable to the long-term sequelae of infection. Design/Methods: The UK MS Register COVID-19 study is a community-based prospective cohort of pwMS launched on March 17th, 2020. We have been collecting data from participants (n=6,618 as of October 5th, 2020) every two weeks from the time of their enrolment in the study. We ask participants about COVID-19 and follow them through their recovery. The UK MS Register holds pre-COVID-19 longitudinal and prospectively collected patient-reported data including web-based Expanded Disability Status Scale (webEDSS), MS Impact Scale (MSIS-29), and Hospital Anxiety and Depression Scale (HADS) scores. Results: Out of 709 participants with self-diagnosed COVID-19, 391 responded to the follow-up questionnaires. 76% (n=297) had fully recovered, 15.9% (n=62) had mostly recovered, and 8.2% (n=32) were still experiencing symptoms at the time of their latest follow-up. Among participants with full recovery, the median (IQR) duration of disease was 10 (6-21) days. Participants who had not recovered completely had been followed up for a median (IQR) duration of 105 (35-131) days. PwMS who had a higher webEDSS score (OR 0.78, 95%CI 0.65-0.93) or physical component of MSIS-29 score (OR 0.97, 95%CI 0.96-0.98) were less likely to report a full recovery. The presence of anxiety (HADS-anxiety ≥11), recorded the year before the pandemic, was associated with a lower probability of complete recovery (OR 0.26, 95%CI 0.10-0.66). Demographics, diseasemodifying therapies, MS duration, or type of MS were not associated with recovery. Conclusions: Physical disability and anxiety prior to the pandemic are the main determinants of persistent COVID-19 symptoms among people with MS.
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Background: The UK MS Register captures longitudinal data directly from people with MS (pwMS) as patient reported outcome measures but also from NHS Trusts via electronic Case Return Form (eCRF). As part of our response to the COVID19 pandemic we designed an anonymised clinical capture instrument to allow clinicians from non affiliated NHS hospitals capture important clinical data on incident cases. Here we outline our current clinicians reported findings from these collected data. Objectives: Report on patients with Multiple Sclerosis and COVID as reported by UK National Health Service MS clinicians to the UK MS Register Methods: Data were captured using the RedCap platform to design forms and were stored on secured databases at Swansea University Medical School. The URL for data capture was shared on social media and via clinician groups to encourage as many clinicians as possible to report hospitalised pwMS and confirmed COVID. Variables included: Age, Gender, MS Type, Expanded Disability Status Score (EDSS), Disease Modifying Therapy (DMT) Details, COVID clinical treatment and outcomes. Results: Between 27/03/2020 and 14/07/2020, 93 patients with COVID were reported. Their mean Age was 53.38 (±14.2) and median EDSS 6.0. Of these 11 patients died with mean Age 63.7(±10.9). Median EDSS 8.0. Multivariate regression showed increased EDSS score to be the most significant factor for mortality (P <0.01) with the other variables (age, gender, disease type, DMT,) not influencing mortality. All the patients that died had progressive MS and only one was on a DMT. Conclusions: Here we present the UK PwMS, with laboratory confirmed COVID19 as reported by hospital clinicians. We found increased disability rather than age or MS type to be the only predictor of mortality. These results are strikingly different from the patients reported UK MS register COVID study (separate abstract) that had a much milder COVID illness that led to hospitalisation in only 3% of the cases.