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EULAR Sjögren's Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjögren's syndrome
  1. Raphaèle Seror1,,3,
  2. Philippe Ravaud1,2,
  3. Xavier Mariette3,,5,
  4. Hendrika Bootsma6,
  5. Elke Theander7,
  6. Arne Hansen8,
  7. Manel Ramos-Casals9,
  8. Thomas Dörner8,
  9. Stefano Bombardieri10,
  10. Eric Hachulla11,
  11. Johan G Brun12,
  12. Aike A Kruize13,14,
  13. Sonja Praprotnik15,
  14. Matija Tomsic15,
  15. Jacques-Eric Gottenberg16,
  16. Valerie Devauchelle17,
  17. Salvatore Devita18,
  18. Cristina Vollenweider19,
  19. Thomas Mandl7,
  20. Athanasios Tzioufas20,
  21. Steven Carsons21,
  22. Alain Saraux17,
  23. Nurhan Sutcliffe22,
  24. Claudio Vitali23,
  25. Simon J Bowman24 on behalf of the EULAR Sjögren's Task Force
  1. 1Center of Clinical Epidemiology, Paris, France
  2. 2INSERM U738, Université Paris-René Descartes, Paris, France
  3. 3Assistance Publique–Hopitaux de Paris, Hôpital Bicêtre, Department of Rheumatology, INSERM U802, Le Kremlin Bicêtre, France
  4. 4Université Paris-Sud 11, Le Kremlin Bicêtre, France
  5. 5INSERM U1012, Le Kremlin Bicêtre, France
  6. 6Department of Rheumatology and Clinical Immunology, University Medical Center Groningen (UMCG), Groningen, The Netherlands
  7. 7Department of Rheumatology, Malmö University Hospital, Lund University, Lund, Sweden
  8. 8Rheumatology Department, Charité, University Hospital, Berlin, Germany
  9. 9Laboratory of Autoimmune Diseases “Josep Font”, Hospital Clinic, Barcelona, Spain
  10. 10Rheumatology Unit, Department of Internal Medicine, University of Pisa, Pisa, Italy
  11. 11Department of Internal Medicine, Claude Huriez Hospital, Lille, France
  12. 12Department of Rheumatology, Haukeland University Hospital, Bergen, Norway
  13. 13Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht (UMCU), Utrecht, The Netherlands
  14. 14Department of Rheumatology, University Medical Center Utrecht, Utrecht, The Netherlands
  15. 15Department of Rheumatology, University Clinical Centre of Ljubljana, Ljubljana, Slovenia
  16. 16Department of Rheumatology, Strasbourg University Hospital, Université de Strasbourg, Strasbourg, France
  17. 17Department of Rheumatology, Hopital Cavale Blanche, Brest, France
  18. 18Clinic of Rheumatology, University Hospital of Udine, University of Udine, Udine, Italy
  19. 19Department of Rheumatology, German Hospital, Buenos-Aires, Argentina
  20. 20Department of Pathophysiology, School of Medicine, University of Athens, Athens, Greece
  21. 21Division of Rheumatology, Allergy and Immunology, Winthrop University Hospital, Mineola, New York, USA
  22. 22Department of Rheumatology, Barts & The Royal London Hospital, London, UK
  23. 23Department of Internal Medicine and Section of Rheumatology, “Villamarina” Hospital, Piombino, Italy
  24. 24Rheumatology Department, University Hospital Birmingham NHS Foundation Trust, Birmingham, UK
  1. Correspondence to Dr Raphaèle Seror, Department of Rheumatology, Hôpital Bicêtre, 78 rue du Général Leclerc, 94275 Le Kremlin Bicêtre, France; raphaele.se{at}gmail.com

Abstract

Objectives To develop a score for assessment of patients' symptoms in primary Sjögren's syndrome (SS): the EULAR SS Patient Reported Index (ESSPRI).

Methods Dryness, pain, somatic and mental fatigue were identified as the main symptoms of patients with primary SS, in studies developing the Profile of Fatigue and Discomfort (PROFAD) and Sicca Symptoms Inventory (SSI). It was suspected that a single 0–10 numerical scale for each domain was sufficient to assess these symptoms. These four scales were gathered to form the ESSPRI. 230 patients, from 12 countries completed the ESSPRI, SSI and PROFAD questionnaires and a 0–10 patient global assessment (PGA). Correlations between each symptom and PGA were obtained. Multiple regression modelling, using PGA as ‘gold standard’ was used to select domains and estimate their weights.

Results PGA had good correlation with dryness, limb pain, fatigue and mental fatigue (r=0.49–0.59, all p<0.0001), but correlated less well with individual dryness features. In multivariate analysis, dryness, limb pain and fatigue, but not mental fatigue, were significantly associated with PGA; weights derived from the regression were identical for these three domains. Thus, ESSPRI was redefined as the mean of the three scales: dryness, limb pain and fatigue. Lastly, ESSPRI significantly correlated with PGA (r=0.70), PROFAD (r=0.73) and SSI (r=0.66).

Conclusion ESSPRI is a very simple index designed to measure patients' symptoms in primary SS. It has good construct validity and is well correlated with SSI and PROFAD. ESSPRI should now be validated for use as an outcome measure in clinical trials.

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Footnotes

  • Funding This project was supported by a grant from EULAR.

  • Competing interests None.

  • Patient consent Obtained.

  • Ethics approval This study was conducted with the approval of the institutional review board of Paris North Hospitals, Paris 7 University, AP-HP (N° IRB0006477).

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

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