Serena Halls1,2, Premarani Sinnathurai3,4, Sarah Hewlett3,4, Sarah L Mackie3,4, Lyn March3,4, Susan J Bartlett3,4, Clifton O Bingham3,4, Rieke Alten3,4, Ina Campbell3,4, Catherine L Hill3,4, Robert J Holt3,4, Rod Hughes3,4, John R Kirwan3,4, Amye L Leong3,4, Ying Ying Leung3,4, Anne Lyddiatt3,4, Lorna Neill3,4, Ana-Maria Orbai3,4. 1. From the Department of Nursing and Midwifery, University of the West of England; University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds; Department of Rheumatology, Ashford and St. Peter's National Health Service (NHS) Foundation Trust, Chertsey; Patient Research Partner PMR-GCA Scotland, Forest Lodge, Foulden, Berwickshire, UK; Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District; Department of Rheumatology, Royal North Shore Hospital, New South Wales; University of Sydney, Sydney; Rheumatology Unit, The Queen Elizabeth Hospital, Adelaide; Discipline of Medicine, University of Adelaide, Adelaide, Australia; Division of Clinical Epidemiology, Division of Rheumatology, and Division Respiratory Epidemiology, McGill University/McGill University Health Centers, Montreal, Québec; Patient Research Partner, Toronto Western Hospital, Toronto; Cochrane Musculoskeletal Group, Institute of Population Health, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland; University of Illinois-Chicago, Chicago, Illinois; Healthy Motivation and Global Alliance for Musculoskeletal Health the Bone and Joint Decade, Santa Barbara, California, USA; Schlosspark-Klinik, University Medicine Berlin, Berlin, Germany; Horizon Pharma LTD, Dublin, Ireland; Department of Rheumatology and Immunology, Singapore General Hospital, Singapore. serena.halls@uwe.ac.uk. 2. S. Halls, PhD, Department of Nursing and Midwifery, University of the West of England; P. Sinnathurai, BSc(Med) MBBS, FRACP, Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District, and Department of Rheumatology, Royal North Shore Hospital, and University of Sydney; S. Hewlett, PhD, RN, Department of Nursing and Midwifery, University of the West of England; S.L. Mackie, BM, BCh, PhD, Leeds Institute of Rheumatic and Musculoskeletal Medicine; L. March, MD, Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District, and Department of Rheumatology, Royal North Shore Hospital, and University of Sydney; S.J. Bartlett, MD, Division of Clinical Epidemiology, Division of Rheumatology, and Division Respiratory Epidemiology, McGill University/McGill University Health Centers, and Division of Rheumatology, Johns Hopkins School of Medicine; C.O. Bingham III, MD, Division of Rheumatology, Johns Hopkins School of Medicine; R. Alten, MD, Schlosspark-Klinik, University Medicine Berlin; I. Campbell, BEd LLB, Patient Research Partner, Toronto Western Hospital; C.L. Hill, MBBS, MD, MSc, FRACP, Staff Specialist, Rheumatology Unit, The Queen Elizabeth Hospital, and Discipline of Medicine, University of Adelaide; R.J. Holt, PharmD, MBA, University of Illinois-Chicago, and Horizon Pharma LTD; R. Hughes, MA, MD, FRCP, Department of Rheumatology, Ashford and St. Peter's NHS Foundation Trust; J.R. Kirwan, MD, Department of Nursing and Midwifery, University of the West of England, and University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary; A.L. Leong, MBA, Patient Partner, Healthy Motivation and Global Alliance for Musculoskeletal Health the Bone and Joint Decade; Y.Y. Leung, MD, Assistant Professor, Department of Rheumatology and Immunology, Singapore General Hospital; A. Lyddiatt, Patient Research Partner, Cochrane Musculoskeletal Group, Institute of Population Health; L.M. Neill, BSc, CPhys, MInstP, Patient Research Partner, Trustee and Secretary, PMR-GCA Scotland; A.M. Morbai, MD, MHS, Division of Rheumatology, Johns Hopkins University School of Medicine. serena.halls@uwe.ac.uk. 3. From the Department of Nursing and Midwifery, University of the West of England; University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds; Department of Rheumatology, Ashford and St. Peter's National Health Service (NHS) Foundation Trust, Chertsey; Patient Research Partner PMR-GCA Scotland, Forest Lodge, Foulden, Berwickshire, UK; Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District; Department of Rheumatology, Royal North Shore Hospital, New South Wales; University of Sydney, Sydney; Rheumatology Unit, The Queen Elizabeth Hospital, Adelaide; Discipline of Medicine, University of Adelaide, Adelaide, Australia; Division of Clinical Epidemiology, Division of Rheumatology, and Division Respiratory Epidemiology, McGill University/McGill University Health Centers, Montreal, Québec; Patient Research Partner, Toronto Western Hospital, Toronto; Cochrane Musculoskeletal Group, Institute of Population Health, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland; University of Illinois-Chicago, Chicago, Illinois; Healthy Motivation and Global Alliance for Musculoskeletal Health the Bone and Joint Decade, Santa Barbara, California, USA; Schlosspark-Klinik, University Medicine Berlin, Berlin, Germany; Horizon Pharma LTD, Dublin, Ireland; Department of Rheumatology and Immunology, Singapore General Hospital, Singapore. 4. S. Halls, PhD, Department of Nursing and Midwifery, University of the West of England; P. Sinnathurai, BSc(Med) MBBS, FRACP, Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District, and Department of Rheumatology, Royal North Shore Hospital, and University of Sydney; S. Hewlett, PhD, RN, Department of Nursing and Midwifery, University of the West of England; S.L. Mackie, BM, BCh, PhD, Leeds Institute of Rheumatic and Musculoskeletal Medicine; L. March, MD, Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District, and Department of Rheumatology, Royal North Shore Hospital, and University of Sydney; S.J. Bartlett, MD, Division of Clinical Epidemiology, Division of Rheumatology, and Division Respiratory Epidemiology, McGill University/McGill University Health Centers, and Division of Rheumatology, Johns Hopkins School of Medicine; C.O. Bingham III, MD, Division of Rheumatology, Johns Hopkins School of Medicine; R. Alten, MD, Schlosspark-Klinik, University Medicine Berlin; I. Campbell, BEd LLB, Patient Research Partner, Toronto Western Hospital; C.L. Hill, MBBS, MD, MSc, FRACP, Staff Specialist, Rheumatology Unit, The Queen Elizabeth Hospital, and Discipline of Medicine, University of Adelaide; R.J. Holt, PharmD, MBA, University of Illinois-Chicago, and Horizon Pharma LTD; R. Hughes, MA, MD, FRCP, Department of Rheumatology, Ashford and St. Peter's NHS Foundation Trust; J.R. Kirwan, MD, Department of Nursing and Midwifery, University of the West of England, and University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary; A.L. Leong, MBA, Patient Partner, Healthy Motivation and Global Alliance for Musculoskeletal Health the Bone and Joint Decade; Y.Y. Leung, MD, Assistant Professor, Department of Rheumatology and Immunology, Singapore General Hospital; A. Lyddiatt, Patient Research Partner, Cochrane Musculoskeletal Group, Institute of Population Health; L.M. Neill, BSc, CPhys, MInstP, Patient Research Partner, Trustee and Secretary, PMR-GCA Scotland; A.M. Morbai, MD, MHS, Division of Rheumatology, Johns Hopkins University School of Medicine.
Abstract
OBJECTIVE: The objectives of the Outcome Measures in Rheumatology (OMERACT) Stiffness special interest group (SIG) are to characterize stiffness as an outcome in rheumatic disease and to identify and validate a stiffness patient-reported outcome (PRO) in rheumatology. METHODS: At OMERACT 2016, international groups presented and discussed results of several concurrent research projects on stiffness: a literature review of rheumatoid arthritis (RA) stiffness PRO measures, a qualitative investigation into the RA and polymyalgia rheumatica patient perspective of stiffness, data-driven stiffness conceptual model development, development and testing of an RA stiffness PRO measure, and a quantitative work testing stiffness items in patients with RA and psoriatic arthritis. RESULTS: The literature review identified 52 individual stiffness PRO measures assessing morning or early morning stiffness severity/intensity or duration. Items were heterogeneous, had little or inconsistent psychometric property evidence, and did not appear to have been developed according to the PRO development guidelines. A poor match between current stiffness PRO and the conceptual model identifying the RA patient experience of stiffness was identified, highlighting a major flaw in PRO selection according to the OMERACT filter 2.0. CONCLUSION: Discussions within the Stiffness SIG highlighted the importance of further research on stiffness and defined a research agenda.
OBJECTIVE: The objectives of the Outcome Measures in Rheumatology (OMERACT) Stiffness special interest group (SIG) are to characterize stiffness as an outcome in rheumatic disease and to identify and validate a stiffness patient-reported outcome (PRO) in rheumatology. METHODS: At OMERACT 2016, international groups presented and discussed results of several concurrent research projects on stiffness: a literature review of rheumatoid arthritis (RA) stiffness PRO measures, a qualitative investigation into the RA and polymyalgia rheumaticapatient perspective of stiffness, data-driven stiffness conceptual model development, development and testing of an RA stiffness PRO measure, and a quantitative work testing stiffness items in patients with RA and psoriatic arthritis. RESULTS: The literature review identified 52 individual stiffness PRO measures assessing morning or early morning stiffness severity/intensity or duration. Items were heterogeneous, had little or inconsistent psychometric property evidence, and did not appear to have been developed according to the PRO development guidelines. A poor match between current stiffness PRO and the conceptual model identifying the RApatient experience of stiffness was identified, highlighting a major flaw in PRO selection according to the OMERACT filter 2.0. CONCLUSION: Discussions within the Stiffness SIG highlighted the importance of further research on stiffness and defined a research agenda.
Authors: Doortje I Krijbolder; Fenne Wouters; Elise van Mulligen; Annette H M van der Helm-van Mil Journal: Rheumatology (Oxford) Date: 2022-05-05 Impact factor: 7.046