RT Journal Article
SR Electronic
T1 Remote Observational Research for Multiple Sclerosis
JF Neurology - Neuroimmunology Neuroinflammation
JO Neurol Neuroimmunol Neuroinflamm
FD Lippincott Williams & Wilkins
SP e200070
DO 10.1212/NXI.0000000000200070
VO 10
IS 2
A1 Riley Bove
A1 Shane Poole
A1 Richard Cuneo
A1 Sasha Gupta
A1 Joseph Sabatino, Jr
A1 Meagan Harms
A1 Tifffany Cooper
A1 William Rowles
A1 Nicolette Miller
A1 Refujia Gomez
A1 Robin Lincoln
A1 Kira McPolin
A1 Kyra Powers
A1 Adam Santaniello
A1 Adam Renschen
A1 Carolyn J. Bevan
A1 Jeffrey M. Gelfand
A1 Douglas S. Goodin
A1 Chu-Yueh Guo
A1 Andrew R. Romeo
A1 Stephen L. Hauser
A1 Bruce Anthony Campbell Cree
YR 2023
UL http://nn.neurology.org/content/10/2/e200070.abstract
AB 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.DMT=disease-modifying treatment; EDSS=Expanded Disability Status Scale; EPIC=Expression/genomics, Proteomics, Imaging, and Clinical; ePR-EDSS=electronic patient-reported EDSS; MS=multiple sclerosis; NS-EDSS=Neurostatus EDSS; tele-EDSS=televideo-enabled Expanded Disability Status Scale