RT Journal Article
SR Electronic
T1 EULAR Sjögren's Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjögren's syndrome
JF Annals of the Rheumatic Diseases
JO Ann Rheum Dis
FD BMJ Publishing Group Ltd and European League Against Rheumatism
SP 968
OP 972
DO 10.1136/ard.2010.143743
VO 70
IS 6
A1 Raphaèle Seror
A1 Philippe Ravaud
A1 Xavier Mariette
A1 Hendrika Bootsma
A1 Elke Theander
A1 Arne Hansen
A1 Manel Ramos-Casals
A1 Thomas Dörner
A1 Stefano Bombardieri
A1 Eric Hachulla
A1 Johan G Brun
A1 Aike A Kruize
A1 Sonja Praprotnik
A1 Matija Tomsic
A1 Jacques-Eric Gottenberg
A1 Valerie Devauchelle
A1 Salvatore Devita
A1 Cristina Vollenweider
A1 Thomas Mandl
A1 Athanasios Tzioufas
A1 Steven Carsons
A1 Alain Saraux
A1 Nurhan Sutcliffe
A1 Claudio Vitali
A1 Simon J Bowman
YR 2011
UL http://ard.bmj.com/content/70/6/968.abstract
AB 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.