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The elaboration of the preliminary Rheumatoid Arthritis Impact of Disease (RAID) score: a EULAR initiative
  1. Laure Gossec (laure.gossec{at}cch.aphp.fr)
  1. Paris Descartes University, Medicine Faculty; UPRES-EA 4058 ; APHP, Rheumatology B, Cochin, France
    1. Maxime Dougados (maxime.dougados{at}cch.aphp.fr)
    1. Paris Descartes University, Medicine Faculty; UPRES-EA 4058 ; APHP, Rheumatology B, Cochin, France
      1. Nathalie Rincheval
      1. Epidemiology and Statistics Department, Montpellier Medicine Faculty, Montpellier, France
        1. Andra Balanescu
        1. Research Center of Rheumatic Diseases, “Sf. Maria” Hospital, University of Bucharest, Romania
          1. Dimitrios T Boumpas
          1. Rheumatology, Clinical Immunology and Allergy, University of Crete, Faculty of Medicine, Heraklion, Greece
            1. Sandra Canadelo
            1. EULAR standing committee of People with Arthritis/Rheumatism in Europe (PARE), Zurich, Switzerland
              1. Loreto Carmona
              1. Research Unit, Spanish Foundation of Rheumatology, Madrid, Spain
                1. Jean-Pierre Daurès
                1. Epidemiology and Statistics Department, Montpellier Medicine Faculty, Montpellier, France
                  1. Marten de Wit
                  1. EULAR standing committee of People with Arthritis/Rheumatism in Europe (PARE), Zurich, Switzerland
                    1. Ben A C Dijkmans
                    1. Rheumatology, VU University medical center and Jan van Breemen Institute, Netherlands
                      1. Matthias Englbrecht
                      1. Department of Internal Medicine 3, University of Erlangen-Nuremberg, Erlangen, Germany
                        1. Zafer Gunendi
                        1. University of Gazi, Department of Physical Medicine and Rehabilitation, Division of Rheumatology, Turkey
                          1. Turid Heiberg
                          1. Dept for Research and Education Ulleval University Hospital, Oslo, Norway
                            1. John Kirwan
                            1. University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, United Kingdom
                              1. Emilio Martin Mola
                              1. Rheumatology Department, Hospital Universitario La Paz, Madrid, Spain
                                1. Marco Matucci Cerinic
                                1. Dept of Medicine, Division of Rheumatology AOUC, Denothe Centre, University of Florence, Firenze, Italy
                                  1. Kati Otsa
                                  1. Rheumatology Department, Tallinn Central Hospital, Estonia
                                    1. Georg Schett
                                    1. Department of Internal Medicine 3, University of Erlangen-Nuremberg, Erlangen, Germany
                                      1. Tuulikki Sokka
                                      1. Jyväskylä Central Hospital, Jyväskylä, Finland
                                        1. George A Wells
                                        1. University of Ottawa Heart Institute, Ottawa, Ontario, Canada
                                          1. Gerd Jenny Aanerud
                                          1. Dept for Research and Education Ulleval University Hospital, Oslo, Norway
                                            1. Antonella Celano
                                            1. Dept of Medicine, Division of Rheumatology AOUC, Denothe Centre, University of Florence, Firenze, Italy
                                              1. Aiki Dudkin
                                              1. Rheumatology Department, Tallinn Central Hospital, Estonia
                                                1. Cristina Hernandez
                                                1. Rheumatology Department, Hospital Universitario La Paz, Madrid, Spain
                                                  1. Katerina Koutsogianni
                                                  1. Rheumatology, Clinical Immunology and Allergy, University of Crete, Faculty of Medicine, Heraklion, Greece
                                                    1. F Nilgun Akca
                                                    1. University of Gazi, Department of Physical Medicine and Rehabilitation, Division of Rheumatology, Turkey
                                                      1. Ana-Maria Petre
                                                      1. Research Center of Rheumatic Diseases, “Sf. Maria” Hospital, University of Bucharest, Romania
                                                        1. Pamela Richards
                                                        1. University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, United Kingdom
                                                          1. Marieke Scholte-Voshaar
                                                          1. Rheumatology, VU University medical center and Jan van Breemen Institute, Netherlands
                                                            1. Gabrielle von Krause
                                                            1. Paris Descartes University, Medicine Faculty; UPRES-EA 4058 ; APHP, Rheumatology B, Cochin, France
                                                              1. Tore K Kvien
                                                              1. Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway

                                                                Abstract

                                                                Background: Current response criteria in rheumatoid arthritis (RA) usually assess only 3 patient-reported outcomes (PROs): pain, functional disability and patient global assessment. Other important PROs, such as fatigue, are not included.

                                                                Objective: To elaborate a patient-derived composite response index for use in clinical trials in RA, the RA Impact of Disease (RAID) score.

                                                                Methods: Ten patients identified 17 domains or areas of health relevant for inclusion into the score, then 96 patients (10 per country in 10 European countries) ranked these domains in order of decreasing importance. The 7 most important domains were selected. Instruments were chosen for each domain, after extensive literature research of psychometric properties and expert opinion. Relative weight of each of the domains was obtained from 505 patients who were asked to “distribute 100 points” among the 7 domains. The average ranks of importance of these domains were then computed.

                                                                Results: The preliminary RAID score includes 7 domains, with the following relative weights: pain (21%), functional disability (16%), fatigue (15%), emotional well-being (12%), sleep (12%), coping (12%), and physical well-being (12%). Weights were similar across countries, and across patient and disease characteristics. Proposed instruments include the Health Assessment Questionnaire and numeric ratings scales.

                                                                Conclusion: The RAID score is a patient-derived weighted score to assess the impact of RA. An ongoing study will allow final choice of questionnaires and assessment of validity. This score can be used in clinical trials as a new composite index that captures information relevant for the patients.

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