Evidence map›Paper›PMID 30219767›Full record

ArticleThe Journal of rheumatology2019

Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study.

Christopher A Mecoli, Jin Kyun Park, Helene Alexanderson, Malin Regardt, Merrilee Needham, Ingrid de Groot, Catherine Sarver, Ingrid E Lundberg, Beverley Shea, Marianne de Visser and 3 more

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The Journal of rheumatology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05832034 (Treatment With add-on IVIg in Myositis Early In the diSease Course May be sUperior to Steroids Alone for Reaching CLinical improvemEnt), which is not on this map. Cited by 26 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
26citing papers in PubMed, 3 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.

NCT05832034 phase2 / phase3active not recruitingnot on this mapstarted 2021, after this paper: background citation

Treatment With add-on IVIg in Myositis Early In the diSease Course May be sUperior to Steroids Alone for Reaching CLinical improvemEnt

TypeinterventionalSponsorAcademisch Medisch Centrum - Universiteit van Amsterdam (AMC-UvA)Ran2021 to 2026Enrolled44ConditionsInflammatory Myopathy, Idiopathic, Dermatomyositis, Antisynthetase Syndrome, Immune-Mediated Necrotizing MyopathyArmsImmune Globulin Intravenous (Human), Placebo
3 · Its place in the literature

Who cites it

26 citing papers in PubMed, 3 syntheses or guidelines pooled it.

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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

13 authors.

Christopher A MecoliFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea. cmecoli1@jhmi.edu.
Jin Kyun ParkFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Helene AlexandersonFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Malin RegardtFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Merrilee NeedhamFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Ingrid de GrootFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Catherine SarverFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Ingrid E LundbergFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Beverley SheaFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Marianne de VisserFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Yeong Wook SongFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Clifton O BinghamFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.
Lisa Christopher-StineFrom the Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea; Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Solna, Sweden; Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Murdoch, Australia; Patient Research Partner, the Netherlands and USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University, Karolinska Institutet, Solna, Sweden; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada; Department of Neurology, Academic Medical Center, University of Amsterdam, the Netherlands; Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea.

Funding

Sample Processing and Immunoassay Research CoreP30AR070254 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI Antony Rosen · 2016 to 2026
$8.9M
Phenotype-Specific Immune Responses in the Systemic VasculitidesP30AR053503 · NIAMS · JOHNS HOPKINS UNIVERSITY · PI ROSEN, ANTONY · 2006 to 2015
$6.4M
NIAMS NIH HHS P30 AR053503NIAMS NIH HHS P30 AR070254
6 · The paper itself

Abstract

objectivePatient-reported outcome measures (PROM) that incorporate the patient perspective have not been well established in idiopathic inflammatory myopathies (IIM). As part of our goal to develop IIM-specific PROM, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of disease and its effects are important to patients and healthcare providers (HCP).

methodsBased on a prior qualitative content analysis of focus groups, an initial list of 24 candidate domains was constructed. We subsequently conducted an international survey to identify the importance of each of the 24 domains to be assessed in clinical research. Patients with IIM, their caregivers, and HCP treating IIM completed the survey.

resultsIn this survey, a total of 638 respondents completed the survey, consisting of 510 patients, 101 HCP, and 27 caregivers from 48 countries. Overall, patients were more likely to rank "fatigue," "cognitive impact," and "difficulty sleeping" higher compared with HCP, who ranked "joint symptoms," "lung symptoms," and "dysphagia" higher. Both patients and providers rated muscle symptoms as their top domain. In general, patients from different countries were in agreement on which domains were most important. One notable exception was that patients from Sweden and the Netherlands ranked lung symptoms significantly higher compared to other countries including the United States and Australia (mean weighted rankings of 2.86 and 2.04 vs 0.76 and 0.80, respectively; p < 0.0001).

conclusionSubstantial differences exist in how IIM is perceived by patients compared to HCP, with different domains prioritized. In contrast, patients' ratings across the world were largely similar.

Indexed as

Attitude of Health PersonnelCaregiversHealth PersonnelAdultAgedConsensusFatigueFemaleHumansMaleMiddle AgedMyositisPatient Reported Outcome MeasuresRheumatologySeverity of Illness IndexDELPHIMYOSITISOMERACTOUTCOME ASSESSMENTPATIENT-REPORTED OUTCOMES

Identifiers

PMID30219767
PMCPMC7497902

What OpenQuestion holds

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Registered trials

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.