Impact of the COVID-19 pandemic on healthcare access and perceived outcomes: A survey study of people with MS in the United States

Introduction: In the context of the COVID-19 pandemic, people with multiple sclerosis (pMS) are particularly vulnerable to adverse outcomes due to disruption of care. Objectives: The CopeMS study led by The University of Texas and the MS Association of America investigates the indirect impact of the COVID-19 pandemic on pMS. Aims: To evaluate whether the COVID-19 pandemic led to changes in healthcare access and patient-reported outcomes of pMS. Methods: A national survey of pMS was conducted in December 2020 to investigate access to MS-related services, perception of risk of COVID-19 when interacting with the healthcare system, and reported changes in neurological function during the first 9 months of the pandemic. Results: 644 pMS participated in our national survey. 46% of responders reported worsening of MS symptoms during the pandemic with increased anxiety and inability to maintain exercise habits as leading causes for worsening. Fatigue, imbalance, impairment of memory and weakness were the symptoms more frequently perceived as worsened. 12% of responders reported more difficulty contacting their neurologist's office during the pandemic. pMS reported widespread disruption of services during the pandemic: 90/161 (56%) responders were unable to continue physical therapy services, 18/126 (14.3%) were unable to continue counseling services, 24/37 (64.9%) were unable to continue occupational therapy, 6/26 (23%) were unable to continue case management services, and 13/19 (68.4%) were unable to continue speech therapy. Telemedicine became the main modality for neurology visits, counseling and case management but was seldom used for other services. 3.1% of responders lost insurance coverage during the pandemic, and 38.2% expected difficulties paying for MS medications or services. 20.5% of participants expressed concerns about the location of their infusions, 37.9% about going to a laboratory facility and 37.7% about going to an imaging facility. Of those who were exercising regularly before the pandemic, 18.2% reported no longer exercising and 52.8% were exercising less than usual. Conclusions: Our findings suggest that the COVID-19 pandemic was associated with perceived worsening of neurological symptoms in pMS due to worsened mental health and lack of physical activity. Despite the expansion of telemedicine, we observed decreased access to healthcare services important to the comprehensive care of pMS.