Beesley, Rebecca, Cauchi, Maria, Davies, L., Upcott, M., Norton, E., Loveless, Sam ORCID: https://orcid.org/0000-0002-5124-4115, Anderson, V., Wynford-Thomas, Rachael, Pickersgill, T. P., Uzochukwu, E., Wardle, M., Robertson, Neil ORCID: https://orcid.org/0000-0002-5409-4909, Tallantyre, Emma ORCID: https://orcid.org/0000-0002-3760-6634 and Willis, Mark ORCID: https://orcid.org/0000-0003-3024-6063 2022. Multiple sclerosis and COVID-19: Assessing risk perception, patient behaviours and access to disease-modifying therapies. Multiple Sclerosis and Related Disorders 68 , 104121. 10.1016/j.msard.2022.104121 |
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Abstract
Background Following the outbreak of COVID-19, global healthcare systems have had to rapidly adapt. People with multiple sclerosis (pwMS) were required to make decisions about their individual risk and consequent work and social behaviors. This study aimed to evaluate risk perception and patterns of shielding behavior amongst pwMS at the onset of the COVID-19 pandemic and the subsequent impact on patients’ employment and access to disease modifying therapies (DMTs). Methods Postal surveys were sent to 1690 people within a UK population-based MS cohort during the first wave of the COVID-19 pandemic. Patients were surveyed on: (i) perceived vulnerability to COVID-19; (ii) isolation behavior; (iii) interruption to DMT; (iv) employment status; (v) level of satisfaction with their current working arrangement. Results Responses were received from 1000 pwMS. Two thirds of patients reported isolating at home during the first wave of the pandemic. This behavior was associated with increased age (p<0.0001), higher disability (p<0.0001) and use of high-efficacy DMTs (p = 0.02). The majority of patients reported feeling vulnerable (82%) with perceived vulnerability associated with higher EDSS (p<0.0001) and receiving a high-efficacy DMT (p = 0.04). Clinician-defined risk was associated with shielding behavior, with those at high-risk more likely to self-isolate/shield (p<0.0001). Patients on high-efficacy DMTs were more likely to have an interruption to their treatment (50%) during the first wave of the pandemic. Most pwMS experienced a change to their working environment, and most were satisfied with the adjustments. Conclusion This study highlights the risk perception, social behavioral practices and changes to treatment experienced by pwMS during the first wave of the COVID-19 pandemic in a large, well-described UK cohort. The results may help inform management of pwMS during future pandemic waves.
Item Type: | Article |
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Date Type: | Publication |
Status: | Published |
Schools: | Medicine MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG) |
Publisher: | Elsevier |
ISSN: | 2211-0348 |
Date of First Compliant Deposit: | 7 October 2022 |
Date of Acceptance: | 14 August 2022 |
Last Modified: | 16 Nov 2024 14:30 |
URI: | https://orca.cardiff.ac.uk/id/eprint/153143 |
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