Complementary reporting by patients and clinicians offers a more thorough picture of the impact of COVID-19 on people with multiple sclerosis

ABSTRACT

Introduction: The Coronavirus disease 2019 (COVID-19) pandemic has created uncertainties about different aspects of the lives of people with multiple sclerosis (PwMS). We intend to understand the impact of the virus and the risks of the infection in PwMS. Methods: The study was launched on 17 March 2020 as part of the United Kingdom (UK) MS Register (UKMSR), a research project with 13,916 PwMS registered as of 22 April 2020 which holds longitudinal data about patients' demographics, MS related and other medical information, and patient-reported outcome measures since 2011. All patients on the UKMSR were asked to participate in the study by completing COVID-19 related questionnaires fortnightly. Telephone interviews by a neurologist confirmed the suspected diagnosis of COVID-19 based on symptoms. We also asked healthcare professionals to provide anonymised data on MS patients with COVID-19 using a separate questionnaire. Results: As of 22 April 2020, 3,702 PwMS participated in the study and recruitment is on-going. A total of 196 (5.29%) participants reported that they had suspected COVID-19 out of which 41 (20.92%) reported having been diagnosed by a healthcare professional. Only three (1.53%) of the patients with suspected COVID-19 required hospitalisation. On the contrary, out of the 26 suspected COVID-19 cases reported by clinicians, 21 have positive polymerase chain reaction tests and 3 have died. Conclusion: These contrasting results emphasise the need to supplement clinician-reported outcomes with community- based studies to understand the true impact of COVID-19 in PwMS.