Perceptions of Multiple Sclerosis Care during the COVID-19 Pandemic: Examining Real-World Evidence from Patients and Providers

Background: Advances in multiple sclerosis (MS) treatment options present opportunities to personalize care plans through shared decision-making (SDM). Good patient-provider communication and SDM are especially critical during the COVID-19 pandemic amidst evolving evidence.

Objectives: To examine alignments and discordances in patients’ and providers’ perceptions of aspects of care pertaining to SDM and the impact of COVID-19 on treatment plans.

Methods: Between 7/2021 and 10/2021, surveys were administered to MS providers (n=22) and MS patients (n=126) from 9 MS clinics in the US. The surveys included tethered items that asked providers to estimate their patients’ preferences and perceptions regarding their MS care.

Results: Patients surveyed were primarily women (87%), had a mean age of 46 years, and on average were 11 years from their diagnosis. Providers surveyed included neurologists (68%), nurse practitioners (14%), physicians assistants (9%), and other healthcare professionals (9%), and had an average of 14 years of experience in MS care. The top treatment goal reported by 64% of patients was preventing disability progression, which aligned with providers’ estimates (65%). However, discordances were seen in additional treatment goals, including symptom control (34% patient-reported vs 17% provider-estimated); quality of life (QoL) (39% vs 26%); preventing relapses (32% vs 17%); and maintaining independence (21% vs 48%). Only 67% of patients reported being satisfied with their MS therapy, whereas 79% of providers estimated that their patients were satisfied. In addition, only 64% of patients reported that their care team is fully aware of how MS affects their QoL, compared to 83% of providers. Regarding communicating symptoms, 48% of patients reported no barriers to communication with their provider, while providers reported their patients are not sure which symptoms are important to share (48%), do not wish to complain (48%), and forget symptoms they experienced (39%). Lastly, 75% of patients reported no changes to their MS treatment plan due to COVID-19, compared to 65% of providers. The top 3 changes in MS treatment plans during the pandemic reported by providers were therapy stopping due to increased risk of contracting COVID-19 (26%), temporary pauses in therapy for vaccination (13%), and therapy switching (13%).

Conclusions: These findings unfold opportunities to align MS care through SDM and patient-provider communication, particularly as the COVID-19 pandemic presents continued challenges.