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

Christopher A Mecoli^{1

2}, Jin Kyun Park^{3

4}, Helene Alexanderson^{3

4}, Malin Regardt^{3

4}, Merrilee Needham^{3

4}, Ingrid de Groot^{3

4}, Catherine Sarver^{3

4}, Ingrid E Lundberg^{3

4}, Beverley Shea^{3

4}, Marianne de Visser^{3

4}, Yeong Wook Song^{3

4}, Clifton O Bingham 3rd^{3

4}, Lisa Christopher-Stine^{3

4}

Affiliations

¹ From 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.
² C.A. Mecoli, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; J.K. Park, MD, Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital; H. Alexanderson, PhD, Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Regardt, PhD, Occupational Therapist, Department of Learning, Informatics and Medical Education, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Needham, MD, Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University; I. de Groot, Patient Research Partner, the Netherlands;C. Sarver, Patient Research Partner, USA; I.E. Lundberg, MD, PhD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Karolinska Institutet; B. Shea, MSN, Center for Global Health, University of Ottawa; M. de Visser, MD, Department of Neurology, Academic Medical Center, University of Amsterdam; Y.W. Song, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; C.O. Bingham 3rd, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University. Dr. Mecoli and Dr. Park are co-first authors. cmecoli1@jhmi.edu.
³ From 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.
⁴ C.A. Mecoli, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; J.K. Park, MD, Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital; H. Alexanderson, PhD, Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Regardt, PhD, Occupational Therapist, Department of Learning, Informatics and Medical Education, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Needham, MD, Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University; I. de Groot, Patient Research Partner, the Netherlands;C. Sarver, Patient Research Partner, USA; I.E. Lundberg, MD, PhD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Karolinska Institutet; B. Shea, MSN, Center for Global Health, University of Ottawa; M. de Visser, MD, Department of Neurology, Academic Medical Center, University of Amsterdam; Y.W. Song, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; C.O. Bingham 3rd, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University. Dr. Mecoli and Dr. Park are co-first authors.

PMID: 30219767
PMCID: PMC7497902
DOI: 10.3899/jrheum.180353

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

Christopher A Mecoli et al. J Rheumatol. 2019 Jan.

. 2019 Jan;46(1):106-111.

doi: 10.3899/jrheum.180353. Epub 2018 Sep 15.

Authors

Affiliations

¹ From 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.
² C.A. Mecoli, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; J.K. Park, MD, Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital; H. Alexanderson, PhD, Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Regardt, PhD, Occupational Therapist, Department of Learning, Informatics and Medical Education, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Needham, MD, Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University; I. de Groot, Patient Research Partner, the Netherlands;C. Sarver, Patient Research Partner, USA; I.E. Lundberg, MD, PhD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Karolinska Institutet; B. Shea, MSN, Center for Global Health, University of Ottawa; M. de Visser, MD, Department of Neurology, Academic Medical Center, University of Amsterdam; Y.W. Song, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; C.O. Bingham 3rd, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University. Dr. Mecoli and Dr. Park are co-first authors. cmecoli1@jhmi.edu.
³ From 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.
⁴ C.A. Mecoli, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; J.K. Park, MD, Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital; H. Alexanderson, PhD, Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine, Rheumatology Unit, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Regardt, PhD, Occupational Therapist, Department of Learning, Informatics and Medical Education, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; M. Needham, MD, Department of Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University; I. de Groot, Patient Research Partner, the Netherlands;C. Sarver, Patient Research Partner, USA; I.E. Lundberg, MD, PhD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Karolinska Institutet; B. Shea, MSN, Center for Global Health, University of Ottawa; M. de Visser, MD, Department of Neurology, Academic Medical Center, University of Amsterdam; Y.W. Song, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; C.O. Bingham 3rd, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University. Dr. Mecoli and Dr. Park are co-first authors.

PMID: 30219767
PMCID: PMC7497902
DOI: 10.3899/jrheum.180353

Abstract

Objective: Patient-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).

Methods: Based 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.

Results: In 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).

Conclusion: Substantial 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.

Keywords: DELPHI; MYOSITIS; OMERACT; OUTCOME ASSESSMENT; PATIENT-REPORTED OUTCOMES.

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Comment in

The Importance of Patient Input into Development of Outcomes in Idiopathic Inflammatory Myopathy.
Huber AM. Huber AM. J Rheumatol. 2019 Jan;46(1):5-6. doi: 10.3899/jrheum.181045. J Rheumatol. 2019. PMID: 30600235 No abstract available.

References

1. Dalakas MC, Hohlfeld R. Polymyositis and dermatomyositis.Lancet 2003;362:971–82. - PubMed
1. Ponyi A, Borgulya G, Constantin T, Vancsa A, Gergely L, Dankó K.Functional outcome and quality of life in adult patients with idiopathic inflammatory myositis. Rheumatology 2005;44:83–8. - PubMed
1. Regardt M, Welin Henriksson E, Alexanderson H, Lundberg IE.Patients with polymyositis or dermatomyositis have reduced grip force and health-related quality of life in comparison with reference values: an observational study. Rheumatology 2011;50:578–85. - PubMed
1. Marie I, Hachulla E, Hatron PY, Hellot MF, Levesque H, Devulder B, et al. Polymyositis and dermatomyositis: short term and longterm outcome, and predictive factors of prognosis. J Rheumatol 2001;28:2230–7. - PubMed
1. OMERACT. [Internet. Accessed August 9, 2018] Available from: www.omeract.org.

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

Affiliations

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

Authors

Affiliations

Abstract

Comment in

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