Research ArticleArticle
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, Yeong Wook Song, Clifton O. Bingham 3rd and Lisa Christopher-Stine
The Journal of Rheumatology September 2018, jrheum.180353; DOI: https://doi.org/10.3899/jrheum.180353
Christopher A. Mecoli
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Jin Kyun Park
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Helene Alexanderson
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Malin Regardt
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Merrilee Needham
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Ingrid de Groot
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Catherine Sarver
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Ingrid E. Lundberg
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Beverley Shea
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Marianne de Visser
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Yeong Wook Song
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Clifton O. Bingham 3rd
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
Lisa Christopher-Stine
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. Portions of the work have been supported by the Rheumatic Diseases Research Core Center (P30-AR053503/AR070254) Human Subjects Core from the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) of the National Institutes of Health (NIH). Dr. Mecoli is a Jerome L. Greene Foundation Scholar and the Foundation has provided support for his work. Dr. Bingham was supported in part through a Methods Award SC14-1402-10818 from the Patient-Centered Outcomes Research Institute (PCORI). Dr. Christopher-Stine is supported through the Huayi and Siuling Zhang Discovery Fund. Portions of the work have been supported by NuFactor and OptionCare. H. Alexanderson and M. Regardt are supported by the Swedish Rheumatism Association. There was funding from OMERACT, which receives unrestricted funds from over 23 clinical research and pharmaceutical companies. All statements in this report including its conclusions are solely those of the authors and do not reflect the opinions of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee, or of the NIH or NIAMS. 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. Address correspondence to Dr. C.A. Mecoli, Johns Hopkins University School of Medicine, Division of Rheumatology, 5200 Eastern Ave., MFL Bldg., Center Tower, Suite 4100, Baltimore, Maryland 21224, USA. E-mail: cmecoli1@jhmi.edu. Accepted for publication June 28, 2018.
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.
In this issue
The Journal of Rheumatology
Vol. 49, Issue 7
1 Jul 2022
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, Yeong Wook Song, Clifton O. Bingham, Lisa Christopher-Stine
The Journal of Rheumatology Sep 2018, jrheum.180353; DOI: 10.3899/jrheum.180353
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, Yeong Wook Song, Clifton O. Bingham, Lisa Christopher-Stine
The Journal of Rheumatology Sep 2018, jrheum.180353; DOI: 10.3899/jrheum.180353
