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November 2021; 8 (6) ArticleOpen Access

Fatigue in Survivors of Autoimmune Encephalitis

Luisa A. Diaz-Arias, Anusha Kierty Yeshokumar, Brittany Glassberg, James F. Sumowski, Ava Easton, John C. Probasco, Arun Venkatesan
First published August 13, 2021, DOI: https://doi.org/10.1212/NXI.0000000000001064
Luisa A. Diaz-Arias
From the Johns Hopkins Encephalitis Center (L.A.D.-A., J.C.P., A.V.), Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD; Department of Neurology (A.K.Y., B.G., J.F.S.), Icahn School of Medicine at Mount Sinai, New York; Encephalitis Society (A.E.), Malton; and Institute of Infection and Global Health (A.E.), University of Liverpool, United Kingdom.
MD
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  • For correspondence: ldiazar1@jhmi.edu
Anusha Kierty Yeshokumar
From the Johns Hopkins Encephalitis Center (L.A.D.-A., J.C.P., A.V.), Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD; Department of Neurology (A.K.Y., B.G., J.F.S.), Icahn School of Medicine at Mount Sinai, New York; Encephalitis Society (A.E.), Malton; and Institute of Infection and Global Health (A.E.), University of Liverpool, United Kingdom.
MD
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  • For correspondence: anusha.yeshokumar@mssm.edu
Brittany Glassberg
From the Johns Hopkins Encephalitis Center (L.A.D.-A., J.C.P., A.V.), Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD; Department of Neurology (A.K.Y., B.G., J.F.S.), Icahn School of Medicine at Mount Sinai, New York; Encephalitis Society (A.E.), Malton; and Institute of Infection and Global Health (A.E.), University of Liverpool, United Kingdom.
MD
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  • For correspondence: brittany.glassberg@icahn.mssm.edu
James F. Sumowski
From the Johns Hopkins Encephalitis Center (L.A.D.-A., J.C.P., A.V.), Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD; Department of Neurology (A.K.Y., B.G., J.F.S.), Icahn School of Medicine at Mount Sinai, New York; Encephalitis Society (A.E.), Malton; and Institute of Infection and Global Health (A.E.), University of Liverpool, United Kingdom.
PhD
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  • For correspondence: james.sumowski@mssm.edu
Ava Easton
From the Johns Hopkins Encephalitis Center (L.A.D.-A., J.C.P., A.V.), Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD; Department of Neurology (A.K.Y., B.G., J.F.S.), Icahn School of Medicine at Mount Sinai, New York; Encephalitis Society (A.E.), Malton; and Institute of Infection and Global Health (A.E.), University of Liverpool, United Kingdom.
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  • For correspondence: ava@encephalitis.info
John C. Probasco
From the Johns Hopkins Encephalitis Center (L.A.D.-A., J.C.P., A.V.), Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD; Department of Neurology (A.K.Y., B.G., J.F.S.), Icahn School of Medicine at Mount Sinai, New York; Encephalitis Society (A.E.), Malton; and Institute of Infection and Global Health (A.E.), University of Liverpool, United Kingdom.
MD
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  • For correspondence: jprobas1@jhmi.edu
Arun Venkatesan
From the Johns Hopkins Encephalitis Center (L.A.D.-A., J.C.P., A.V.), Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD; Department of Neurology (A.K.Y., B.G., J.F.S.), Icahn School of Medicine at Mount Sinai, New York; Encephalitis Society (A.E.), Malton; and Institute of Infection and Global Health (A.E.), University of Liverpool, United Kingdom.
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Citation
Fatigue in Survivors of Autoimmune Encephalitis
Luisa A. Diaz-Arias, Anusha Kierty Yeshokumar, Brittany Glassberg, James F. Sumowski, Ava Easton, John C. Probasco, Arun Venkatesan
Neurol Neuroimmunol Neuroinflamm Nov 2021, 8 (6) e1064; DOI: 10.1212/NXI.0000000000001064

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Abstract

Background and Objectives To evaluate the impact of fatigue after autoimmune encephalitis, determine associations with patients' characteristics, and identify factors that contribute to its development.

Methods In a first cohort recruited via several encephalitis support organizations, self-reported questionnaires were used to evaluate fatigue, depression, and sleep quality in adults after autoimmune encephalitis. In a second cohort where more in-depth clinical characterization could be performed, adults with encephalitis from 2 tertiary hospitals were evaluated using the same questionnaires. Patients' characteristics were retrospectively captured.

Results In the first cohort (mean [SD] age; 43 [16] years, 220 [65%] female), 220 of 338 participants (65%) reported fatigue, 175 of 307 (57%) depression, and 211 of 285 (74%) poor sleep quality. In the second cohort (48 [19] years; 43 [50%] women), 42 of 69 participants (61%) reported fatigue, whereas 23 of 68 (34%) reported depression and 44 of 66 (67%) poor sleep quality, despite more than 80% having “good” modified Rankin scale (mRS) scores (0–2). Individuals with anti-NMDA receptor encephalitis reported lower fatigue scores than those with other autoimmune encephalitis types. In a multivariate analysis examining factors at discharge that might predict fatigue scores, only anti-NMDA receptor encephalitis was a (negative) predictor of fatigue and remained so when potential confounders were included.

Discussion The impact of fatigue after autoimmune encephalitis is prominent and not fully accounted for by depression or sleep quality, nor adequately captured by mRS scores for disability. Fatigue is pervasive across autoimmune encephalitis, although lower scores are reported in anti-NMDA receptor encephalitis. Fatigue should be screened routinely, considered as an outcome measure in clinical trials, and further studied from a mechanistic standpoint.

Glossary

AE=
adverse event;
BDI-Fast Screen=
Beck Depression Inventory-Fast Screen;
CASE=
clinical assessment scale in AE;
ICU=
intensive care unit;
ISMMS=
Icahn School of Medicine at Mount Sinai;
mRS=
modified Rankin scale;
MFIS=
Modified Fatigue Impact Scale;
PPHS=
Program for the Protection of Human Subjects;
PSQI=
Pittsburgh Sleep Quality Index;
SREAT=
steroid-responsive encephalopathy associated with autoimmune thyroiditis

Footnotes

  • Go to Neurology.org/NN for full disclosures. Funding information is provided at the end of the article.

  • ↵* These authors contributed equally to this work (co-first authors).

  • The Article Processing Charge was funded by the authors.

  • Received March 18, 2021.
  • Accepted in final form June 21, 2021.
  • Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.

This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CC BY-NC-ND), which permits downloading and sharing the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

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