Considerations and priorities for incorporating the patient perspective on remission in Rheumatoid Arthritis: An OMERACT 2020 Special Interest Group report

2021 ◽  
Author(s):  
Bethan Jones ◽  
Caroline A Flurey ◽  
Susanna Proudman ◽  
Ricardo J.O. Ferreira ◽  
Marieke Voshaar ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Interest Group ◽  
Special Interest ◽  
Patient Perspective ◽  
Special Interest Group ◽  
Group Report

Developing a Standardized Definition for Disease “Flare” in Rheumatoid Arthritis (OMERACT 9 Special Interest Group): Table 1.

2009 ◽  
Vol 36 (10) ◽  
pp. 2335-2341 ◽  
Author(s):  
CLIFTON O. BINGHAM ◽  
CHRISTOPH POHL ◽  
THASIA G. WOODWORTH ◽  
SARAH E. HEWLETT ◽  
JAMES E. MAY ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Disease Activity ◽  
Interest Group ◽  
Special Interest ◽  
Disease Activity Score ◽  
Special Interest Group ◽  
Critical Elements ◽  
Working Definition ◽  
Delphi Exercise ◽  
Definition Of

Objective.Traditional outcome measures in randomized controlled trials (RCT) include well-established response criteria as well as ACR EULAR responses using Disease Activity Score 44 (DAS44)/DAS28 to assess improvement; however, a measure to assess worsening of disease has yet to be developed. This special interest group (SIG) was established to develop an evidence-based, consensus-driven standard definition of “flare” in rheumatoid arthritis (RA).Methods.At OMERACT 8, the need for a standardized definition of RA flare was recognized; interested individuals developed a proposal to form a SIG. A literature review was performed to identify publications and abstracts with flare definitions applied in RA, JIA, and lupus RCT as well as concerning patient perspectives on disease worsening. A SIG was held at OMERACT 9 with breakout sessions for patients and investigators.Results.The RA flare SIG was attended by about 120 participants, including 11 patients. Patients and investigators held separate breakout sessions to discuss various aspects of disease worsening. The following consensus was obtained at OMERACT 9: a working definition of flare should indicate worsening of disease activity (88%), persistence, and duration as critical elements (77%), and consideration of change or increase in therapy (74%).Conclusion.A working definition of RA flare was developed based on these votes: flare is any worsening of disease activity that would, if persistent, in most cases lead to initiation or change of therapy; and a flare represents a cluster of symptoms of sufficient duration and intensity to require initiation, change, or increase in therapy. Using this working definition, evaluation of candidate domains will be conducted via Delphi exercise and further informed by patient focus groups. Validation of candidate definitions in appropriate RCT will be required.

scholarly journals The SPECTRA Collaboration OMERACT Special Interest Group: Current Research and Future Directions

2017 ◽  
Vol 44 (12) ◽  
pp. 1911-1915 ◽  
Author(s):  
Kathryn S. Stok ◽  
Stephanie Finzel ◽  
Andrew J. Burghardt ◽  
Philip G. Conaghan ◽  
Cheryl Barnabe
Keyword(s):  
Rheumatoid Arthritis ◽  
Computed Tomography ◽  
Clinical Trials ◽  
Direct Measurement ◽  
Interest Group ◽  
Special Interest ◽  
Observational Studies ◽  
Special Interest Group ◽  
Future Directions ◽  
Longitudinal Observational Studies

Objective.High-resolution peripheral quantitative computed tomography (HR-pQCT) has the potential to improve radiographic progression determination in clinical trials and longitudinal observational studies. The goal of this work was to describe the current state of research presented at Outcome Measures in Rheumatology (OMERACT) 2016 and ensuing future directions outlined during discussion among attendees.Methods.At OMERACT 2016, SPECTRA (Study grouP for xtrEme-Computed Tomography in Rheumatoid Arthritis) introduced efforts to (1) validate the HR-pQCT according to OMERACT guidelines, focusing on rheumatoid arthritis (RA), and (2) find alternatives for automated joint space width (JSW) analysis. The Special Interest Group (SIG) was presented to patient research partners, physicians/researchers, and SIG leaders followed by a 40-min discussion on future directions.Results.A consensus definition for RA erosion using HR-pQCT was demonstrated through a systematic literature review and a Delphi exercise. Histopathology and perfusion studies were presented that analyzed the true characteristics of cortical breaks in HR-pQCT images, and to provide criterion validity. Results indicate that readers were able to discriminate between erosion and small vascular channels. Moderate reliability (ICC 0.206–0.871) of direct erosion size measures was shown, which improved (> 0.9) only when experienced readers were considered. Quantification of erosion size was presented for scoring, direct measurement, and volumetric approaches, as well as a reliability exercise for direct measurement. Three methods for JSW measurement were compared, all indicating excellent reproducibility with differences at the extremes (i.e., near-zero and joint edge thickness).Conclusion.Initial reports on HR-pQCT are promising; however, to consider its use in clinical trials and longitudinal observational studies, it is imperative to assess the responsiveness of erosion measurement quantification.

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

2017 ◽  
Vol 44 (12) ◽  
pp. 1889-1893 ◽  
Author(s):  
Linda A. Rasch ◽  
Maarten Boers ◽  
Catherine L. Hill ◽  
Marieke Voshaar ◽  
Wijnanda Hoogland ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Construct Validity ◽  
Disease Activity ◽  
Interest Group ◽  
Preliminary Data ◽  
Special Interest ◽  
Working Group ◽  
Special Interest Group ◽  
Measurement Instruments ◽  
Patients Perspective

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.

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