Evidence map›Paper›PMID 31355316›Full record

ArticleNeurology(R) neuroimmunology & neuroinflammation2019

Neuromyelitis optica spectrum disorder: Patient experience and quality of life.

Janine Beekman, Aysha Keisler, Omar Pedraza, Masayuki Haramura, Athos Gianella-Borradori, Eliezer Katz, John N Ratchford, Gerard Barron, Lawrence J Cook, Jacinta M Behne and 3 more

Abstract read
In one paragraph

Article in Neurology(R) neuroimmunology & neuroinflammation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 52 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
52citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

52 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  14. Perspectives on Neuromyelitis Optica Spectrum Disorders, the Narrative Medicine contribution to care.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024
    Article
  15. Article
  16. Prevalence of neuromyelitis optica spectrum disorder in the United States.Multiple sclerosis (Houndmills, Basingstoke, England) · 2024
    Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Janine BeekmanIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Aysha KeislerIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.ORCID 0000-0003-0845-0957
Omar PedrazaIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Masayuki HaramuraIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Athos Gianella-BorradoriIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Eliezer KatzIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
John N RatchfordIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Gerard BarronIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Lawrence J CookIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Jacinta M BehneIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Terrence F BlaschkeIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Terry J SmithIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.
Michael R YeamanIpsos Public Affairs (J.B., A.K., O.P.), Washington, DC; Chugai Pharmaceutical Co., Ltd. (M.H.), Chuo-ku, Tokyo, Japan; Chugai Pharma USA, Inc., (A.G.-B.), Berkeley Heights, NJ; Viela Bio (E.K., J.N.R.), 1 MedImmune Way, Gaithersburg, MD; MedImmune Ltd. Riverside Building (G.B.), Granta Park, Cambridge, UK; Department of Pediatrics (L.J.C.), University of Utah, Salt Lake City, UT; The Guthy-Jackson Charitable Foundation (J.M.B.), Beverly Hills; Departments of Medicine and of Molecular Pharmacology (T.F.B.), Stanford University School of Medicine, Stanford, CA; Department of Ophthalmology and Visual Sciences (T.J.S.), Kellogg Eye Center and Division of Metabolism, Endocrine and Diabetes, Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI; Department of Medicine (M.R.Y.), University of California, Los Angeles, Los Angeles; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA.

Funding

University of Michigan Autoimmunity Center of Excellence, Clinical Research ProgrUM1AI110557 · NIAID · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI FOX, DAVID ALAN · 2014 to 2018
$543k
NIAID NIH HHS UM1 AI110557
6 · The paper itself

Abstract

Objective: To gain insights into NMOSD disease impact, which may negatively affect QoL of patients, their families, and social network. Methods: The current study used validated instruments to assess physical, emotional, and socioeconomic burden of NMOSD on QoL among 193 patients. Results: A majority of patients reported an initial diagnosis of a disease other than NMOSD. Overall, two-thirds of patients reported NMOSD as having a strong negative impact on physical health (Short Form-36 [SF-36] score 27.1 ± 39.1), whereas emotional well-being was relatively unimpaired on average (SF-36 score 54.0 ± 44.9). A subset of patients reported having the highest category of emotional health despite worse physical health or financial burden, suggesting psychological resilience. Pain (r = 0.61) and bowel/bladder dysfunction (r = 0.41) imposed the greatest negative physical impact on overall QoL. In turn, ability to work correlated inversely with worsened health (r = -0.68). Increased pain, reduced sexual function, inability to work, and reduced QoL had greatest negative impacts on emotional well-being. Dissatisfaction with treatment options and economic burden correlated inversely with QoL. Conclusions: Collectively, the current findings advance the understanding of physical, emotional, social, and financial tolls imposed by NMOSD. These insights offer potential ways to enhance QoL by managing pain, enhancing family and social networks, and facilitating active employment.

Indexed as

AdultAgedCohort StudiesCost of IllnessCross-Sectional StudiesDepressionDisability EvaluationEmploymentFatigueFemaleHumansMaleMiddle AgedNeuromyelitis OpticaPainPsychological Distress

Identifiers

PMID31355316
PMCPMC6624099

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.