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Remote Observational Research for Multiple Sclerosis: A Natural Experiment.
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.
  • Bove R; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA. riley.bove@ucsf.edu.
  • Poole S; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Cuneo R; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Gupta S; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Sabatino J; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Harms M; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Cooper T; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Rowles W; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Miller N; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Gomez R; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Lincoln R; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • McPolin K; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Powers K; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Santaniello A; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Renschen A; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Bevan CJ; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Gelfand JM; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Goodin DS; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Guo CY; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Romeo AR; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
  • Hauser SL; From the UCSF Weill Institute for Neuroscience, Division of Neuroimmunology and Glial Biology, Department of Neurology, University of California San Francisco, San Francisco, CA.
Neurol Neuroimmunol Neuroinflamm ; 10(2)2023 03.
Article in English | MEDLINE | ID: covidwho-2252822
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.
Subject(s)

Full text: Available Collection: International databases Database: MEDLINE Main subject: COVID-19 / Multiple Sclerosis Type of study: Cohort study / Experimental Studies / Observational study / Prognostic study / Randomized controlled trials Limits: Humans Language: English Year: 2023 Document Type: Article Affiliation country: NXI.0000000000200070

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Full text: Available Collection: International databases Database: MEDLINE Main subject: COVID-19 / Multiple Sclerosis Type of study: Cohort study / Experimental Studies / Observational study / Prognostic study / Randomized controlled trials Limits: Humans Language: English Year: 2023 Document Type: Article Affiliation country: NXI.0000000000200070