Validating Rheumatoid Arthritis Remission Using the Patients' Perspective: Results from a Special Interest Group at OMERACT 2016

Linda A Rasch^{1

2}, Maarten Boers^{3

4}, Catherine L Hill^{3

4}, Marieke Voshaar^{3

4}, Wijnanda Hoogland^{3

4}, Maarten de Wit^{3

4}, Caroline Flurey^{3

4}, Bev Davis^{3

4}, Merete Lund Hetland^{3

4}, Cecilie Heegaard Brahe^{3

4}, Laure Gossec^{3

4}, George A Wells^{3

4}, Peter Tugwell^{3

4}, Bindee Kuriya^{3

4}, Niti Goel^{3

4}, Jasvinder A Singh^{3

4}, Cátia Duarte^{3

4}, José Da Silva^{3

4}, Dirkjan van Schaardenburg^{3

4}, Susanna Proudman^{3

4}, Lilian H D van Tuyl; Working Group on the Patients’ Perspective on Remission in Rheumatoid Arthritis

Affiliations

¹ From the Amsterdam Rheumatology and Immunology Center | VU University Medical Center; Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, the Netherlands; Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide, Adelaide, Australia; University of the West of England, Bristol, UK; Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet, Glostrup, Denmark; Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France; Department of Medicine, University of Ottawa, Ottawa; University of Toronto, Toronto, Ontario, Canada; Quintiles and Duke University School of Medicine, Durham, North Carolina; University of Alabama at Birmingham, Birmingham, Alabama, USA; Faculty of Medicine and Academic Hospital, University of Coimbra, Coimbra, Portugal. l.rasch@vumc.nl.
² L.A. Rasch, MSc, Amsterdam Rheumatology and Immunology Center | VU University Medical Center; M. Boers, MD, MSc, PhD, Professor, Epidemiology and Biostatistics, VU University Medical Center, and Amsterdam Rheumatology and Immunology Center | Reade; C.L. Hill, MD, Professor, University of Adelaide; M. Voshaar, MSc, Patient Partner; W. Hoogland, MD, Patient Partner; M. de Wit, PhD, Patient Partner; C. Flurey, PhD, University of the West of England; B. Davis, Patient Partner; M.L. Hetland, MD, PhD, Professor, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; C.H. Brahe, MD, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; L. Gossec, MD, PhD, Professor, Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology; G.A. Wells, MD, Professor, University of Ottawa; P. Tugwell, MD, Professor, Department of Medicine, University of Ottawa; B. Kuriya, MD, University of Toronto; N. Goel, MD, Assistant Professor, Quintiles and Duke University School of Medicine; J.A. Singh, MBBS, MPH, Professor, University of Alabama at Birmingham; C. Duarte, MD, Faculty of Medicine and Academic Hospital, University of Coimbra; J. Da Silva, MD, PhD, Professor, Faculty of Medicine and Academic Hospital, University of Coimbra; D. van Schaardenburg, MD, PhD, Professor, Amsterdam Rheumatology and Immunology Center | Reade; S. Proudman, MBBS, Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide; L.H. van Tuyl, PhD, MBA, Amsterdam Rheumatology and Immunology Center | VU University Medical Center. l.rasch@vumc.nl.
³ From the Amsterdam Rheumatology and Immunology Center | VU University Medical Center; Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, the Netherlands; Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide, Adelaide, Australia; University of the West of England, Bristol, UK; Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet, Glostrup, Denmark; Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France; Department of Medicine, University of Ottawa, Ottawa; University of Toronto, Toronto, Ontario, Canada; Quintiles and Duke University School of Medicine, Durham, North Carolina; University of Alabama at Birmingham, Birmingham, Alabama, USA; Faculty of Medicine and Academic Hospital, University of Coimbra, Coimbra, Portugal.
⁴ L.A. Rasch, MSc, Amsterdam Rheumatology and Immunology Center | VU University Medical Center; M. Boers, MD, MSc, PhD, Professor, Epidemiology and Biostatistics, VU University Medical Center, and Amsterdam Rheumatology and Immunology Center | Reade; C.L. Hill, MD, Professor, University of Adelaide; M. Voshaar, MSc, Patient Partner; W. Hoogland, MD, Patient Partner; M. de Wit, PhD, Patient Partner; C. Flurey, PhD, University of the West of England; B. Davis, Patient Partner; M.L. Hetland, MD, PhD, Professor, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; C.H. Brahe, MD, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; L. Gossec, MD, PhD, Professor, Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology; G.A. Wells, MD, Professor, University of Ottawa; P. Tugwell, MD, Professor, Department of Medicine, University of Ottawa; B. Kuriya, MD, University of Toronto; N. Goel, MD, Assistant Professor, Quintiles and Duke University School of Medicine; J.A. Singh, MBBS, MPH, Professor, University of Alabama at Birmingham; C. Duarte, MD, Faculty of Medicine and Academic Hospital, University of Coimbra; J. Da Silva, MD, PhD, Professor, Faculty of Medicine and Academic Hospital, University of Coimbra; D. van Schaardenburg, MD, PhD, Professor, Amsterdam Rheumatology and Immunology Center | Reade; S. Proudman, MBBS, Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide; L.H. van Tuyl, PhD, MBA, Amsterdam Rheumatology and Immunology Center | VU University Medical Center.

PMID: 28765250
DOI: 10.3899/jrheum.161111

Validating Rheumatoid Arthritis Remission Using the Patients' Perspective: Results from a Special Interest Group at OMERACT 2016

Linda A Rasch et al. J Rheumatol. 2017 Dec.

. 2017 Dec;44(12):1889-1893.

doi: 10.3899/jrheum.161111. Epub 2017 Aug 1.

Authors

Affiliations

¹ From the Amsterdam Rheumatology and Immunology Center | VU University Medical Center; Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, the Netherlands; Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide, Adelaide, Australia; University of the West of England, Bristol, UK; Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet, Glostrup, Denmark; Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France; Department of Medicine, University of Ottawa, Ottawa; University of Toronto, Toronto, Ontario, Canada; Quintiles and Duke University School of Medicine, Durham, North Carolina; University of Alabama at Birmingham, Birmingham, Alabama, USA; Faculty of Medicine and Academic Hospital, University of Coimbra, Coimbra, Portugal. l.rasch@vumc.nl.
² L.A. Rasch, MSc, Amsterdam Rheumatology and Immunology Center | VU University Medical Center; M. Boers, MD, MSc, PhD, Professor, Epidemiology and Biostatistics, VU University Medical Center, and Amsterdam Rheumatology and Immunology Center | Reade; C.L. Hill, MD, Professor, University of Adelaide; M. Voshaar, MSc, Patient Partner; W. Hoogland, MD, Patient Partner; M. de Wit, PhD, Patient Partner; C. Flurey, PhD, University of the West of England; B. Davis, Patient Partner; M.L. Hetland, MD, PhD, Professor, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; C.H. Brahe, MD, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; L. Gossec, MD, PhD, Professor, Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology; G.A. Wells, MD, Professor, University of Ottawa; P. Tugwell, MD, Professor, Department of Medicine, University of Ottawa; B. Kuriya, MD, University of Toronto; N. Goel, MD, Assistant Professor, Quintiles and Duke University School of Medicine; J.A. Singh, MBBS, MPH, Professor, University of Alabama at Birmingham; C. Duarte, MD, Faculty of Medicine and Academic Hospital, University of Coimbra; J. Da Silva, MD, PhD, Professor, Faculty of Medicine and Academic Hospital, University of Coimbra; D. van Schaardenburg, MD, PhD, Professor, Amsterdam Rheumatology and Immunology Center | Reade; S. Proudman, MBBS, Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide; L.H. van Tuyl, PhD, MBA, Amsterdam Rheumatology and Immunology Center | VU University Medical Center. l.rasch@vumc.nl.
³ From the Amsterdam Rheumatology and Immunology Center | VU University Medical Center; Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, the Netherlands; Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide, Adelaide, Australia; University of the West of England, Bristol, UK; Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet, Glostrup, Denmark; Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France; Department of Medicine, University of Ottawa, Ottawa; University of Toronto, Toronto, Ontario, Canada; Quintiles and Duke University School of Medicine, Durham, North Carolina; University of Alabama at Birmingham, Birmingham, Alabama, USA; Faculty of Medicine and Academic Hospital, University of Coimbra, Coimbra, Portugal.
⁴ L.A. Rasch, MSc, Amsterdam Rheumatology and Immunology Center | VU University Medical Center; M. Boers, MD, MSc, PhD, Professor, Epidemiology and Biostatistics, VU University Medical Center, and Amsterdam Rheumatology and Immunology Center | Reade; C.L. Hill, MD, Professor, University of Adelaide; M. Voshaar, MSc, Patient Partner; W. Hoogland, MD, Patient Partner; M. de Wit, PhD, Patient Partner; C. Flurey, PhD, University of the West of England; B. Davis, Patient Partner; M.L. Hetland, MD, PhD, Professor, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; C.H. Brahe, MD, Copenhagen Center for Arthritis Research and DANBIO, Center for Rheumatology and Spine Diseases, Righospitalet; L. Gossec, MD, PhD, Professor, Sorbonne Universités, UPMC Univ Paris 06; AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology; G.A. Wells, MD, Professor, University of Ottawa; P. Tugwell, MD, Professor, Department of Medicine, University of Ottawa; B. Kuriya, MD, University of Toronto; N. Goel, MD, Assistant Professor, Quintiles and Duke University School of Medicine; J.A. Singh, MBBS, MPH, Professor, University of Alabama at Birmingham; C. Duarte, MD, Faculty of Medicine and Academic Hospital, University of Coimbra; J. Da Silva, MD, PhD, Professor, Faculty of Medicine and Academic Hospital, University of Coimbra; D. van Schaardenburg, MD, PhD, Professor, Amsterdam Rheumatology and Immunology Center | Reade; S. Proudman, MBBS, Royal Adelaide Hospital and Discipline of Medicine, University of Adelaide; L.H. van Tuyl, PhD, MBA, Amsterdam Rheumatology and Immunology Center | VU University Medical Center.

PMID: 28765250
DOI: 10.3899/jrheum.161111

Abstract

Objective: The Outcome Measures in Rheumatology (OMERACT) working group on the patients' perspective on remission in rheumatoid arthritis (RA) has been working on this topic since 2010. At OMERACT 2016, progress and preliminary data on validity of measurement instruments for pain, fatigue, and independence in remission in RA were presented, and future directions were explored.

Methods: A special interest group was organized, in which the current data on the patients' perspective on remission were presented. The ongoing study that aimed to validate measurement instruments for pain, fatigue, and independence in a state of low disease activity or remission was presented, and preliminary data on construct validity and discriminative capacity were evaluated cross-sectionally.

Results: At OMERACT 2016, the progress of the working group and preliminary data from 142 of the anticipated 300 patients were presented. Selected instruments significantly correlated with the Disease Activity Score in 28 joints (construct validity) and all instruments except 1 discriminated between patients in and patients not in remission. The subsequent discussion mainly focused around 3 points: (1) the formulation of patient perceived remission, (2) the duration of remission, and (3) the measurement of the domain independence. An informal vote indicated a slight preference for working toward modifying the current remission criteria by adding patient-reported outcomes (PRO), or by substituting the patient's global assessment with 1 or more PRO.

Conclusion: More evidence on measuring patients' perspective on remission in RA is needed before an informed decision can be made regarding development or modification of remission definitions.

Keywords: OMERACT; PATIENT PERSPECTIVE; PATIENT-REPORTED OUTCOME; REMISSION; RHEUMATOID ARTHRITIS.

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Validating Rheumatoid Arthritis Remission Using the Patients' Perspective: Results from a Special Interest Group at OMERACT 2016

Affiliations

Validating Rheumatoid Arthritis Remission Using the Patients' Perspective: Results from a Special Interest Group at OMERACT 2016

Authors

Affiliations

Abstract

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Medical