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Updating the Psoriatic Arthritis (PsA) Core Domain Set: A Report from the PsA Workshop at OMERACT 2016
Ana-Maria Orbai1,2, Maarten de Wit3,4, Philip J Mease3,4
1From the Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, Maryland; Rheumatology Research, Swedish Medical Center and University of Washington School of Medicine, Seattle, Washington; Department of Dermatology, University of Utah, Salt Lake City, Utah; Quintiles, Duke University School of Medicine, Durham, North Carolina; Division of Immunology, Stanford University, Palo Alto, California; Cleveland Clinic, Cleveland, Ohio; University of Pennsylvania, Philadelphia, Pennsylvania, USA; VU Medical Centre, Amsterdam; Department of Rheumatology, Leiden University Medical Center, Leiden, the Netherlands; Department of Rheumatology, St. Vincent's University Hospital, and Conway Institute for Biomolecular Research, University College Dublin, Dublin, Ireland; Royal National Hospital for Rheumatic Diseases; Royal National Hospital for Rheumatic Diseases, Bath; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds; Leeds Musculoskeletal Biomedical Research Unit, Leeds Teaching Hospitals UK National Health Service (NHS) Trust, Leeds, UK; Toronto Western Hospital; University of Toronto; Krembil Research Institute; Psoriatic Arthritis Program, University Health Network; Women's College Research Institute, Women's College Hospital, University of Toronto, Toronto; Ottawa Hospital Research Institute, School of Epidemiology, Public Health and Preventative Medicine, University of Ottawa, Ottawa, Ontario, Canada; Sorbonne Universités, UPMC Univ Paris 06, Institut Pierre Louis d'Epidémiologie et de Santé Publique, GRC-UPMC 08 (EEMOIS); AP-HP, Pitié Salpêtrière Hospital, Department of Rheumatology, Paris, France; The Parker Institute, Bispebjerg and Frederiksberg Hospital, Frederiksberg, Denmark; Department of Rheumatology and Immunology, Singapore General Hospital, Singapore; Department of Internal Medicine, Division of Rheumatology, Hacettepe University, Ankara, Turkey. aorbai1@jhmi.edu.
Objective:
To include the patient perspective in accordance with the Outcome Measures in Rheumatology (OMERACT) Filter 2.0 in the updated Psoriatic Arthritis (PsA) Core Domain Set for randomized controlled trials (RCT) and longitudinal observational studies (LOS).
Methods:
At OMERACT 2016, research conducted to update the PsA Core Domain Set was presented and discussed in breakout groups. The updated PsA Core Domain Set was voted on and endorsed by OMERACT participants.
Results:
We conducted a systematic literature review of domains measured in PsA RCT and LOS, and identified 24 domains. We conducted 24 focus groups with 130 patients from 7 countries representing 5 continents to identify patient domains. We achieved consensus through 2 rounds of separate surveys with 50 patients and 75 physicians, and a nominal group technique meeting with 12 patients and 12 physicians. We conducted a workshop and breakout groups at OMERACT 2016 in which findings were presented and discussed. The updated PsA Core Domain Set endorsed with 90% agreement by OMERACT 2016 participants included musculoskeletal disease activity, skin disease activity, fatigue, pain, patient's global assessment, physical function, health-related quality of life, and systemic inflammation, which were recommended for all RCT and LOS. These were important, but not required in all RCT and LOS: economic cost, emotional well-being, participation, and structural damage. Independence, sleep, stiffness, and treatment burden were on the research agenda.
Conclusion:
The updated PsA Core Domain Set was endorsed at OMERACT 2016. Next steps for the PsA working group include evaluation of PsA outcome measures and development of a PsA Core Outcome Measurement Set.