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. 2009 May 27:7:46.
doi: 10.1186/1477-7525-7-46.

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

Barbara Segal  1 , Simon J Bowman, Philip C Fox, Frederick B Vivino, Nandita Murukutla, Jeff Brodscholl, Sarika Ogale, Lachy McLean
Affiliations

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

Barbara Segal et al. Health Qual Life Outcomes. .

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.

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Figures

Figure 1
Figure 1
Impact of SS among patients with low and high sicca severity.
Figure 2
Figure 2
Ratings of fatigue and sicca severity on PROFAD-SSI domains among PhysR patients and controls.
See this image and copyright information in PMC

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