Update on Outcome Measure Development in Large-vessel Vasculitis: Report from OMERACT 2018

Sibel Z Aydin; Joanna C Robson; Antoine G Sreih; Catherine Hill; Fatma Alibaz-Oner; Sarah Mackie; Susan Beard; Ahmet Gul; Gülen Hatemi; Tanaz A Kermani; Alfred Mahr; Alexa Meara; Nataliya Milman; Beverley Shea; Gunnar Tómasson; Peter Tugwell; Haner Direskeneli; Peter A Merkel

doi:10.3899/jrheum.181072

Update on Outcome Measure Development in Large-vessel Vasculitis: Report from OMERACT 2018

J Rheumatol. 2019 Sep;46(9):1198-1201. doi: 10.3899/jrheum.181072. Epub 2019 Mar 15.

Authors

Sibel Z Aydin^{1

2}, Joanna C Robson^{1

2}, Antoine G Sreih^{1

2}, Catherine Hill^{1

2}, Fatma Alibaz-Oner^{1

2}, Sarah Mackie^{1

2}, Susan Beard^{1

2}, Ahmet Gul^{1

2}, Gülen Hatemi^{1

2}, Tanaz A Kermani^{1

2}, Alfred Mahr^{1

2}, Alexa Meara^{1

2}, Nataliya Milman^{1

2}, Beverley Shea^{1

2}, Gunnar Tómasson^{1

2}, Peter Tugwell^{1

2}, Haner Direskeneli^{1

2}, Peter A Merkel^{3

4}

Affiliations

¹ From the Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Department of Clinical Epidemiology, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; University of the West of England; University of Bristol; University Hospitals Bristol National Health Service (NHS) Trust, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine; Leeds Teaching Hospitals NHS Trust, Leeds, UK; Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania; Division of Rheumatology, University of California at Los Angeles, Los Angeles, California; Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA; Discipline of Medicine, University of Adelaide; The Queen Elizabeth Hospital, Adelaide, Australia; Fatih Sultan Mehmet Training and Research Hospital; Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland.
² S.Z. Aydin, Associate Professor in Rheumatology, Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; J.C. Robson, MRCP, PhD, Consultant Senior Lecturer, University of the West of England, and Honorary Senior Lecturer, University of Bristol, and Honorary Consultant in Rheumatology, University Hospitals Bristol NHS Trust; A.G. Sreih, MD, Assistant Professor of Medicine, Division of Rheumatology, University of Pennsylvania; C. Hill, MD, Professor, Discipline of Medicine, University of Adelaide, and Consultant Rheumatologist, The Queen Elizabeth Hospital; F. Alibaz-Oner, MD, Associate Professor of Rheumatology, Fatih Sultan Mehmet Training and Research Hospital; S. Mackie, MRCP, PhD, Associate Professor, Leeds Institute of Rheumatic and Musculoskeletal Medicine, and Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust; S. Beard, Bmus, Adelaide, Australia; A. Gul, MD, Professor of Rheumatology, Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; G. Hatemi, MD, Professor of Medicine, Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine; T.A. Kermani, MD, MS, Associate Professor of Medicine, Division of Rheumatology, University of California at Los Angeles; A. Mahr, MD, PhD, Professor of Internal Medicine, Department of Internal Medicine, University Paris Diderot; A. Meara, MD, Assistant Professor, Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center; N. Milman, MD, Assistant Professor, Division of Rheumatology, University of Ottawa, and Division of Rheumatology, The Ottawa Hospital, and Department of Clinical Epidemiology, Ottawa Hospital Research Institute; B. Shea, PhD, Clinical Investigator and Adjunct Professor, Ottawa Hospital Research Institute, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; G. Tómasson, MD, PhD, Assistant Professor of Medicine, Department of Public Health Sciences, University of Iceland; P. Tugwell, MD, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute; H. Direskeneli, MD, Professor of Medicine, Division of Rheumatology, Marmara University, School of Medicine; P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania.
³ From the Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Department of Clinical Epidemiology, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; University of the West of England; University of Bristol; University Hospitals Bristol National Health Service (NHS) Trust, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine; Leeds Teaching Hospitals NHS Trust, Leeds, UK; Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania; Division of Rheumatology, University of California at Los Angeles, Los Angeles, California; Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA; Discipline of Medicine, University of Adelaide; The Queen Elizabeth Hospital, Adelaide, Australia; Fatih Sultan Mehmet Training and Research Hospital; Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland. pmerkel@upenn.edu.
⁴ S.Z. Aydin, Associate Professor in Rheumatology, Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; J.C. Robson, MRCP, PhD, Consultant Senior Lecturer, University of the West of England, and Honorary Senior Lecturer, University of Bristol, and Honorary Consultant in Rheumatology, University Hospitals Bristol NHS Trust; A.G. Sreih, MD, Assistant Professor of Medicine, Division of Rheumatology, University of Pennsylvania; C. Hill, MD, Professor, Discipline of Medicine, University of Adelaide, and Consultant Rheumatologist, The Queen Elizabeth Hospital; F. Alibaz-Oner, MD, Associate Professor of Rheumatology, Fatih Sultan Mehmet Training and Research Hospital; S. Mackie, MRCP, PhD, Associate Professor, Leeds Institute of Rheumatic and Musculoskeletal Medicine, and Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust; S. Beard, Bmus, Adelaide, Australia; A. Gul, MD, Professor of Rheumatology, Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; G. Hatemi, MD, Professor of Medicine, Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine; T.A. Kermani, MD, MS, Associate Professor of Medicine, Division of Rheumatology, University of California at Los Angeles; A. Mahr, MD, PhD, Professor of Internal Medicine, Department of Internal Medicine, University Paris Diderot; A. Meara, MD, Assistant Professor, Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center; N. Milman, MD, Assistant Professor, Division of Rheumatology, University of Ottawa, and Division of Rheumatology, The Ottawa Hospital, and Department of Clinical Epidemiology, Ottawa Hospital Research Institute; B. Shea, PhD, Clinical Investigator and Adjunct Professor, Ottawa Hospital Research Institute, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; G. Tómasson, MD, PhD, Assistant Professor of Medicine, Department of Public Health Sciences, University of Iceland; P. Tugwell, MD, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute; H. Direskeneli, MD, Professor of Medicine, Division of Rheumatology, Marmara University, School of Medicine; P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania. pmerkel@upenn.edu.

Abstract

Objective: The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group seeks to develop validated outcome measures for use in trials for large-vessel vasculitis (LVV).

Methods: An international Delphi exercise conducted among investigators identified items considered important to measure active disease. In parallel, qualitative research with patients was conducted, including interviews and focus groups.

Results: Next steps prioritized by the group for LVV include (1) defining disease states (remission, flare, and patient-acceptable symptom state) and (2) selection of patient-reported outcome tools.

Conclusion: The ultimate goal is to develop an OMERACT-endorsed core set of outcome measures for use in clinical trials of LVV.

Keywords: GIANT CELL ARTERITIS; LARGE-VESSEL VASCULITIS; OMERACT; OUTCOMES; TAKAYASU ARTERITIS; VASCULITIS.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Giant Cell Arteritis / diagnosis*
Humans
Outcome Assessment, Health Care
Patient Reported Outcome Measures
Rheumatology
Severity of Illness Index
Takayasu Arteritis / diagnosis*

Abstract

Publication types

MeSH terms

Grants and funding