Research

Primary Sjögren's Syndrome: health experiences and predictors of health quality among patients in the United States

Barbara Segal¹ , Simon J Bowman² , Philip C Fox³ , Frederick B Vivino⁴ , Nandita Murukutla⁵ , Jeff Brodscholl⁶ , Sarika Ogale⁷ and Lachy McLean⁸

¹  Associate Professor, Division of Rheumatic and Autoimmune Diseases, Department of Medicine, University of Minnesota, USA

²  Consultant Rheumatologist, University Hospital Birmingham, UK

³  Visiting Scientist, Department of Oral Medicine, Carolinas Medical Center, Charlotte, USA

⁴  Clinical Associate Professor, Penn Presbyterian Medical Center, USA

⁵  Research Manager, Health Care and Policy Research, Harris Interactive, USA

⁶  Research Methodologist, Harris Interactive, USA

⁷  Health Economist, Genentech, USA

⁸  Genentech, USA

author email corresponding author email

Health and Quality of Life Outcomes 2009, 7:46doi:10.1186/1477-7525-7-46

Published:	27 May 2009

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).

Conclusion

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.