title: Primary Sjögren's Syndrome: health experiences and predictors of health quality among patients in the United States.
abstract: OBJECTIVE
  To assess the health related quality of life of patients with primary Sjögren's Syndrome (PSS) in a large US sample.
  
  
  METHODS
  Questionnaires were mailed to 547 patients with a confirmed diagnosis of PSS (PhysR-PSS) and all active members of the Sjögren's Syndrome Foundation USA (SSF-PSS), half of whom identified a friend without PSS to also complete the survey.
  
  
  RESULTS
  277 PhysR-PSS patients were compared to 606 controls. The mean age was 62 years in the PhysR-PSS group and 61 years in the control group. 90% in both groups were women. Time from first symptom to diagnosis of PSS was a mean of 7 years. Sicca related morbidity, fatigue severity, depression and pain (assessed by validated questionnaires, PROFAD-SSI, FACIT-F, CES-D, BPI) were significantly greater, and all eight SF-36 domains were significantly diminished, in patients compared to controls. Somatic fatigue was the dominant predictor of physical function and of general health. Depression was the dominant predictor of emotional well being. Health care utilization was higher in patients than controls, including out of pocket dental expenses (mean: PhysR-PSS = $1473.3, controls = $503.6), dental visits (mean: PhysR-PSS = 4.0, controls = 2.3), current treatments (mean: PhysR-PSS = 6.6, controls = 2.5), and hospitalizations (53% PhysR-PSS, vs. 40% controls).
  
  
  CONCLUSIONS
  Diminished health quality and excess health costs are prevalent among PSS patients. Health experiences and functional impact of PSS is similar among US and European patients. Delayed diagnosis, sicca related morbidity, fatigue, pain and depression are substantial suggesting unmet health needs and the importance of earlier recognition of PSS.
authors.affiliation: Associate Professor, Division of Rheumatic and Autoimmune Diseases, Department of Medicine, University of Minnesota, USA. segal017@umn.edu
authors.forename: Barbara
authors.initials: B
authors.lastname: Segal
authors.forename: Simon J
authors.initials: SJ
authors.lastname: Bowman
authors.forename: Philip C
authors.initials: PC
authors.lastname: Fox
authors.forename: Frederick B
authors.initials: FB
authors.lastname: Vivino
authors.forename: Nandita
authors.initials: N
authors.lastname: Murukutla
authors.forename: Jeff
authors.initials: J
authors.lastname: Brodscholl
authors.forename: Sarika
authors.initials: S
authors.lastname: Ogale
authors.forename: Lachy
authors.initials: L
authors.lastname: McLean
mesh_terms: D000328:Adult; D000368:Aged; D000704:Analysis of Variance; D003729:Dental Care / Q000191:economics / Q000706:statistics & numerical data; D003863:Depression / Q000209:etiology; D015673:Fatigue Syndrome, Chronic / Q000209:etiology; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data; D006306:Health Surveys; D006801:Humans; D016014:Linear Models; D008875:Middle Aged; D010146:Pain / Q000209:etiology; D011788:Quality of Life; D012720:Severity of Illness Index; D012859:Sjogren's Syndrome / Q000150:complications / Q000523:psychology; D013001:Somatoform Disorders / Q000209:etiology; D011795:Surveys and Questionnaires; D014481:United States