title: EULAR Sjogren's Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjogren's syndrome.
abstract: OBJECTIVE
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Center of Clinical Epidemiology, Paris, France. raphaele.se@gmail.com
authors.forename: Raphaèle
authors.initials: R
authors.lastname: Seror
authors.forename: Philippe
authors.initials: P
authors.lastname: Ravaud
authors.forename: Xavier
authors.initials: X
authors.lastname: Mariette
authors.forename: Hendrika
authors.initials: H
authors.lastname: Bootsma
authors.forename: Elke
authors.initials: E
authors.lastname: Theander
authors.forename: Arne
authors.initials: A
authors.lastname: Hansen
authors.forename: Manel
authors.initials: M
authors.lastname: Ramos-Casals
authors.forename: Thomas
authors.initials: T
authors.lastname: Dörner
authors.forename: Stefano
authors.initials: S
authors.lastname: Bombardieri
authors.forename: Eric
authors.initials: E
authors.lastname: Hachulla
authors.forename: Johan G
authors.initials: JG
authors.lastname: Brun
authors.forename: Aike A
authors.initials: AA
authors.lastname: Kruize
authors.forename: Sonja
authors.initials: S
authors.lastname: Praprotnik
authors.forename: Matija
authors.initials: M
authors.lastname: Tomsic
authors.forename: Jacques-Eric
authors.initials: JE
authors.lastname: Gottenberg
authors.forename: Valerie
authors.initials: V
authors.lastname: Devauchelle
authors.forename: Salvatore
authors.initials: S
authors.lastname: Devita
authors.forename: Cristina
authors.initials: C
authors.lastname: Vollenweider
authors.forename: Thomas
authors.initials: T
authors.lastname: Mandl
authors.forename: Athanasios
authors.initials: A
authors.lastname: Tzioufas
authors.forename: Steven
authors.initials: S
authors.lastname: Carsons
authors.forename: Alain
authors.initials: A
authors.lastname: Saraux
authors.forename: Nurhan
authors.initials: N
authors.lastname: Sutcliffe
authors.forename: Claudio
authors.initials: C
authors.lastname: Vitali
authors.forename: Simon J
authors.initials: SJ
authors.lastname: Bowman
mesh_terms: D000328:Adult; D000368:Aged; D015352:Dry Eye Syndromes / Q000175:diagnosis; D005221:Fatigue / Q000209:etiology; D005260:Female; D006801:Humans; D008297:Male; D005222:Mental Fatigue / Q000209:etiology; D008875:Middle Aged; D010146:Pain / Q000209:etiology; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D012859:Sjogren's Syndrome / Q000150:complications / Q000175:diagnosis* / Q000188:drug therapy; D014987:Xerostomia / Q000175:diagnosis