Background: The broad impact of the COVID-19 pandemic on people with multiple sclerosis (PwMS) and their health, behaviors, and ability to seek care is not well understood.
Objectives: Here, we present findings from a survey of PwMS, reporting their views on how the pandemic has impacted their well-being and the medical care they received.
Methods: People with a confirmed MS diagnosis from Canada, France, Germany, Italy, Spain, the UK, and the US participated in a 15-minute online questionnaire survey conducted between June 17 and July 22, 2020. The questionnaire was designed to cover PwMS views on the following topics: impact of COVID-19 on emotional health and well-being; changes in care and new challenges; role of telemedicine; and need for further support.
Results: A total of 280 PwMS (100 from the US) were surveyed. Of those, 82% were women, 30% had severe MS, and 12% had confirmed (11%) or suspected (1%) infection with SARS-CoV-2, the causative agent of COVID-19. The mean age was 39.9 years and the mean time since MS diagnosis was 9.4 years. Overall, 76% of PwMS reported that they are more concerned for their general health and well-being because of the pandemic, and 65% were concerned about the impact of COVID-19 on their emotional status. In addition, 46% of PwMS felt they are at a greater risk of contracting COVID-19 and 49% felt they would experience a severe form of the disease if they contracted it. Among people with severe MS, 63% reported exercising less than before, compared with 50% and 58% among people with mild and moderate MS, respectively. People with severe MS also reported having reduced or no access to support services (44%) and having less contact with their health care providers (38%). Overall, satisfaction with medical care during the pandemic was 71%, compared with 88% in the prepandemic period. Some PwMS recognized benefits of telemedicine, with 52% reporting satisfaction with not having to travel; however, 48% were worried that the remote assessments were not thorough enough. In addition, 46% of PwMS needed more information on the potential impact of the pandemic on their symptoms, and 44% wanted to know how the course of COVID-19 may differ due to MS.
Conclusions: Our survey indicates that the COVID-19 pandemic has a negative impact on PwMS both emotionally and physically. Moreover, PwMS are keen for extra support and information on how COVID-19 may impact disease progression or treatment.
STUDY SUPPORT: Sanofi.