The impact of the COVID-19 pandemic on people with multiple sclerosis: A longitudinal survey study

Introduction: Government-imposed non-pharmaceutical interventions during the ongoing pandemic of SARS-CoV 2 disease (COVID-19), such as lockdowns, nighttime curfews, social distancing and self-isolation seek to delay and mitigate the spread of the virus. However, restrictive interventions can also introduce a variety of collateral effects that can worsen people's mental status and functional abilities, especially in chronic conditions such as multiple sclerosis. In particular, people with multiple sclerosis (pwMS) are at risk that continuous disease monitoring, rehabilitation options, and timely interventions may be hampered or even prevented. The goal of our study was to examine the implications of the COVID-19 pandemic on provision of care, health resource use, clinical outcomes and the health status of pwMS. Methods: A longitudinal, non-interventional survey study was conducted with questionnaires administered at four different points in time at the Multiple Sclerosis Center Dresden, Germany. The first three surveys were carried out during and after German lockdown periods. The fourth survey is planned as soon as all participants will have received a vaccination offer. The surveys collected information on health resource use and loss (e.g. medical care, rehabilitation services), the patients' attitudes toward pandemic-related aspects as well as on the current (psychological) health status. Results: Out of 1045 pwMS, 979 completed the first, 447 the second and 427 the third questionnaire. Participants showed a mean age of 46.71 ± 13.07 years, with most of them being female (72.8 %) and presenting a relapsing remitting course (78.1%). Median EDSS was 2.5. Compared with before the pandemic, 45.9% pwMS left their home less frequently at the begin of the pandemic, 19.2% consulted their primary care physician less frequently, 10.3% their neurologist, 34.8% their physiotherapist, and 20.9% participated in rehabilitation sports less frequently. Conversely, 20% reported exercising at home more often. However, 70% up to 90% indicated that they have not changed their behaviour in using these resources. More detailed results from the follow-up surveys will be presented. Conclusions: We could show that the COVID-19 pandemic had an impact on patient well-being, health care delivery, and utilization patterns in pwMS. It may become critical to open the door to digital innovations that enable uninterrupted (remote) medical care in the event of future pandemics.