PT  - JOURNAL ARTICLE
AU  - Raphaèle Seror
AU  - Philippe Ravaud
AU  - Xavier Mariette
AU  - Hendrika Bootsma
AU  - Elke Theander
AU  - Arne Hansen
AU  - Manel Ramos-Casals
AU  - Thomas Dörner
AU  - Stefano Bombardieri
AU  - Eric Hachulla
AU  - Johan G Brun
AU  - Aike A Kruize
AU  - Sonja Praprotnik
AU  - Matija Tomsic
AU  - Jacques-Eric Gottenberg
AU  - Valerie Devauchelle
AU  - Salvatore Devita
AU  - Cristina Vollenweider
AU  - Thomas Mandl
AU  - Athanasios Tzioufas
AU  - Steven Carsons
AU  - Alain Saraux
AU  - Nurhan Sutcliffe
AU  - Claudio Vitali
AU  - Simon J Bowman
TI  - EULAR Sjögren's Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjögren's syndrome
AID  - 10.1136/ard.2010.143743
DP  - 2011 Jun 01
TA  - Annals of the Rheumatic Diseases
PG  - 968--972
VI  - 70
IP  - 6
4099  - http://ard.bmj.com/content/70/6/968.short
4100  - http://ard.bmj.com/content/70/6/968.full
SO  - Ann Rheum Dis2011 Jun 01; 70
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.