Remote Observational Research for Multiple Sclerosis: A Natural Experiment. Issue 2 (28th March 2023)

• Record Type: Journal Article
• Authors: Bove, Riley; Poole, Shane; Cuneo, Richard; Gupta, Sasha; Sabatino, Joseph; Harms, Meagan; Cooper, Tifffany; Rowles, William; Miller, Nicolette; Gomez, Refujia; Lincoln, Robin; McPolin, Kira; Powers, Kyra; Santaniello, Adam; Renschen, Adam; Bevan, Carolyn J.; Gelfand, Jeffrey M.; Goodin, Douglas S.; Guo, Chu-Yueh; Romeo, Andrew R.; Hauser, Stephen L.; Campbell Cree, Bruce Anthony
• Is Part Of: Neurology. Volume 10:Issue 2(2023)
• Publication Date: 2023-03-28
• Subjects: Neuroimmunology -- Periodicals; Neurology -- Periodicals; 616.8
• DOI: 10.1212/NXI.0000000000200070
• Languages: English
• ISSNs: 2332-7812

Abstract

Abstract : Background and Objectives: Prospective, deeply phenotyped research cohorts monitoring individuals with chronic neurologic conditions, such as multiple sclerosis (MS), depend on continued participant engagement. The COVID-19 pandemic restricted in-clinic research activities, threatening this longitudinal engagement, but also forced adoption of televideo-enabled care. This offered a natural experiment in which to analyze key dimensions of remote research: (1) comparison of remote vs in-clinic visit costs from multiple perspectives and (2) comparison of the remote with in-clinic measures in cross-sectional and longitudinal disability evaluations. Methods: Between March 2020 and December 2021, 207 MS cohort participants underwent hybrid in-clinic and virtual research visits; 96 contributed 100 "matched visits, " that is, in-clinic (Neurostatus-Expanded Disability Status Scale [NS-EDSS]) and remote (televideo-enabled EDSS [tele-EDSS]; electronic patient-reported EDSS [ePR-EDSS]) evaluations. Clinical, demographic, and socioeconomic characteristics of participants were collected. Results: The costs of remote visits were lower than in-clinic visits for research investigators (facilities, personnel, parking, participant compensation) but also for participants (travel, caregiver time) and carbon footprint ( p < 0.05 for each). Median cohort EDSS was similar between the 3 modalities (NS-EDSS: 2, tele-EDSS: 1.5, ePR-EDSS: 2, range 0.6.5); the remote evaluations were each noninferior to the NS-EDSS within ±0.5 EDSS point (TOST for noninferiority, p < 0.01 for each). Furthermore, year to year, the % of participants with worsening/stable/improved EDSS scores was similar, whether each annual evaluation used NS-EDSS or whether it switched from NS-EDSS to tele-EDSS. Discussion: Altogether, the current findings suggest that remote evaluations can reduce the costs of research participation for patients, while providing a reasonable evaluation of disability trajectory longitudinally. This could inform the design of remote research that is more inclusive of diverse participants.