ABSTRACT
Background: The COVID-19 pandemic led to changes in healthcare delivery for people living with multiple sclerosis (MSers), largely due to the rapid increase in the use of telemedicine. The learnings from this change may influence the future of MS care, providing an opportunity for MSers to shape the framework of clinical care. Goals: The goals of this research were to 1) gain lived experience insights to understand the impact of the pandemic on MSers' access to, and delivery of, clinical care about 18 months into the pandemic, and 2) understand MSers' experiences of telemedicine, including the adoption, feasibility, benefits, drawbacks, and preferences relative to their previous experience with in-person appointments. Method(s): An online volunteer survey (in English), available 27 August 2021 to 22 September 2021, was emailed or accessed through social media for adults (>=18) who self-reported an MS diagnosis. Result(s): 2,214 respondents answered at least the first question and 1,469 completed it. Most respondents lived in the UK (65%), were white (89%), female (77%), with diagnosis of relapsingremitting MS (66%). Despite the pandemic, 42% of respondents were dissatisfied with the level of contact with their MS neurologist. Attending in-person appointments with MS clinical team was challenging for 51%, primarily due to symptoms/disability. Over the past year, 74% of respondents had a telemedicine (telephone or video) appointment and 51% had in-person appointments. More than half (60%) considered telemedicine to be the same or better than in-person appointments, especially if via video. Various types of appointments were identified as 'acceptable' or 'unacceptable' for telemedicine. Although there were varying degrees of confidence with technology and use of telemedicine for remote care, the majority indicated recognition of the role of telemedicine in the future of MS clinical care and believe technology improves their lives. Conclusion(s): Best practice for implementing video appointments by MS healthcare teams should include recognition of the patient perspectives and managing their expectations around the limitations. Considerations should include MSers' different confidence levels in engaging in telemedicine, understanding of appointment types better suited for in-person vs video, and heterogeneity of MS, including greater symptom burden for MSers with progressive MS, potentially impacting their ability to travel to in-person appointments.