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Patient and rheumatologist perspectives on glucocorticoids: an exercise to improve the implementation of the European League Against Rheumatism (EULAR) recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases
  1. M C van der Goes1,
  2. J W G Jacobs1,
  3. M Boers2,
  4. T Andrews3,
  5. M A M Blom-Bakkers1,
  6. F Buttgereit4,
  7. N Caeyers5,
  8. E H Choy6,
  9. M Cutolo7,
  10. J A P Da Silva8,
  11. L Guillevin9,
  12. M Holland4,
  13. J R Kirwan3,
  14. J Rovensky10,
  15. K G Saag11,
  16. G Severijns12,
  17. S Webber3,
  18. R Westhovens12,
  19. J W J Bijlsma1
  1. 1Department of Rheumatology & Clinical Immunology, University Medical Center, Utrecht, The Netherlands
  2. 2Department of Clinical Epidemiology and Biostatistics, VU University Medical Centre, Amsterdam, The Netherlands
  3. 3University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK
  4. 4Department of Rheumatology and Clinical Immunology, Charité Universitätsmedizin Berlin, Berlin, Germany
  5. 5EULAR Social Leagues Patients' Representative, Leuven, Belgium
  6. 6Sir Alfred Baring Garrod Clinical Trials Unit, Academic Department of Rheumatology, King's College London, London, UK
  7. 7Research Laboratory and Academic Unit of Clinical Rheumatology, Department of Internal Medicine, University of Genova, Genova, Italy
  8. 8Reumatologia, Hospitais da Universidade de Coimbra, Coimbra, Portugal
  9. 9Service de Médecine Interne, Centre de Référence National ‘Plan Maladies Rares’, Vascularites et Sclérodermie, Hôpital Cochin, Assistance Publique–Hôpitaux de Paris, Université Paris-V, Paris, France
  10. 10National Institute of Rheumatic Diseases Piest'any, Piest'any, Slovakia
  11. 11Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, Birmingham, Alabama, USA
  12. 12Department of Rheumatology, University Hospitals KU Leuven, Leuven, Belgium
  1. Correspondence to Dr Marlies van der Goes, Department of Rheumatology & Clinical Immunology, University Medical Center Utrecht, PO Box 85500, 3508 GA Utrecht, The Netherlands; m.c.vandergoes{at}umcutrecht.nl

Abstract

Objective To explore perspectives among patients and rheumatologists on glucocorticoid (GC) therapy and European League Against Rheumatism (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 In all, 140 patients (78% women; mean age 53 years; 61% patients with rheumatoid arthritis) 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 patient and rheumatologist views on GCs corresponded 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 patient and rheumatologist perspectives should be included early in the process of formulating recommendations.

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Footnotes

  • Funding This exercise was financially supported by EULAR (‘Implementation of the recommendations on the management of systemic glucocorticoid therapy in rheumatic diseases, including patients’ perspectives'; project 2007–07).

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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