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Patients' and rheumatologists' perspectives on glucocorticoids an exercise to improve the implementation of the EULAR recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases.
  1. M C Van der Goes (m.c.vandergoes{at}umcutrecht.nl)
  1. Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, Netherlands
    1. J WG Jacobs
    1. Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, Netherlands
      1. M Boers
      1. Department of Clinical Epidemiology and Biostatistics, VU University Medical Centre, Amsterdam, Netherlands
        1. T Andrews
        1. University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, United Kingdom
          1. M AM Blom-Bakkers
          1. Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, Netherlands
            1. F Buttgereit
            1. Department of Rheumatology and Clinical Immunology, Charité Universitätsmedizin Berlin, Germany
              1. N Caeyers
              1. EULAR Social Leagues Patients’ Representative, Belgium
                1. E H Choy
                1. Academic Department of Rheumatology, King's College London, United Kingdom
                  1. M Cutolo
                  1. Research Laboratory and Academic Unit of Clinical Rheumatology, University of Genova, Italy
                    1. J AP Da Silva
                    1. Reumatologia, Hospitais da Universidade de Coimbra, Portugal
                      1. L Guillevin
                      1. Service de médecine interne, hôpital Cochin, Assistance Publique–Hôpitaux de Paris, Université Paris, France
                        1. M Holland
                        1. Department of Rheumatology and Clinical Immunology, Charité Universitätsmedizin Berlin, Germany
                          1. J R Kirwan
                          1. University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, United Kingdom
                            1. J Rovensky
                            1. National Institute of Rheumatic Diseases Piest'any, Slovakia
                              1. K G Saag
                              1. Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, United States
                                1. G Severijns
                                1. Department of Rheumatology, University Hospitals KU Leuven, Belgium
                                  1. S Webber
                                  1. University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, United Kingdom
                                    1. R Westhovens
                                    1. Department of Rheumatology, University Hospitals KU Leuven, Belgium
                                      1. J WJ Bijlsma
                                      1. Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, Netherlands

                                        Abstract

                                        Objective: To explore perspectives among patients and rheumatologists on glucocorticoid (GC) therapy and EULAR recommendations on the management of systemic GC therapy in order to enhance implementation of the recommendations.

                                        Methods: Rheumatologists (from eight countries) and patients (from five countries) acquainted with GCs participated in separate meetings, during which positive and negative aspects of GC therapy were discussed and possible adverse events (AEs) were ranked for importance; in addition participants were asked to evaluate the published EULAR recommendations. The reports from these meetings and themes related to implementation of the recommendations were discussed during an international forum of the experts who had formulated the recommendations and patient participants.

                                        Results: 140 patients (78% female; mean age 53 years; 61% rheumatoid arthritis patients) and 110 rheumatologists (mean work experience 15 years) participated in the meetings. Osteoporosis, diabetes and cardiovascular diseases were ranked among the five most worrisome AEs by patients and rheumatologists. In both groups, there was agreement with most of the recommendations; the recommendations on GC information cards and GC use during pregnancy scored lowest. Ideas to improve implementation of the recommendations and a research agenda were generated.

                                        Conclusion: The patients' and rheumatologists' views on GCs correspond to a large extent, reflected by concerns in both groups about osteoporosis, diabetes and cardiovascular diseases. Specific problems with the EULAR recommendations were identified and addressed to improve their implementation. This exercise shows that patients’ and rheumatologists’ perspectives should be included early in the process of formulating recommendations.

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