Primary Sjögren's Syndrome: Health Experiences and Predictors of Health Quality Among Patients in the United States

Overview

Journal Health Qual Life Outcomes

Publisher Biomed Central

Specialty Public Health

Date 2009 May 29

PMID 19473510

Citations 88

Authors

Barbara Segal

Simon J Bowman

Philip C Fox

Frederick B Vivino

Nandita Murukutla

Jeff Brodscholl

Sarika Ogale

Lachy Mclean

Affiliations

Soon will be listed here.

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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References

Strombeck B, Ekdahl C, Manthorpe R, Wikstrom I, Jacobsson L . Health-related quality of life in primary Sjögren's syndrome, rheumatoid arthritis and fibromyalgia compared to normal population data using SF-36. Scand J Rheumatol. 2000; 29(1):20-8. DOI: 10.1080/030097400750001761. View

Yellen S, Cella D, Webster K, Blendowski C, Kaplan E . Measuring fatigue and other anemia-related symptoms with the Functional Assessment of Cancer Therapy (FACT) measurement system. J Pain Symptom Manage. 1997; 13(2):63-74. DOI: 10.1016/s0885-3924(96)00274-6. View

Malinow K, Molina R, Gordon B, Selnes O, Provost T, Alexander E . Neuropsychiatric dysfunction in primary Sjögren's syndrome. Ann Intern Med. 1985; 103(3):344-50. DOI: 10.7326/0003-4819-103-3-344. View

Utset T, Fink J, Doninger N . Prevalence of neurocognitive dysfunction and other clinical manifestations in disabled patients with systemic lupus erythematosus. J Rheumatol. 2006; 33(3):531-8. View

Daniels T, Fox P . Salivary and oral components of Sjögren's syndrome. Rheum Dis Clin North Am. 1992; 18(3):571-89. View

Wolfe F, Hawley D, Wilson K . The prevalence and meaning of fatigue in rheumatic disease. J Rheumatol. 1996; 23(8):1407-17. View

Hietaharju A, Yli-Kerttula U, Hakkinen V, Frey H . Nervous system manifestations in Sjögren's syndrome. Acta Neurol Scand. 1990; 81(2):144-52. DOI: 10.1111/j.1600-0404.1990.tb00951.x. View

Thomas E, Hay E, Hajeer A, Silman A . Sjögren's syndrome: a community-based study of prevalence and impact. Br J Rheumatol. 1998; 37(10):1069-76. DOI: 10.1093/rheumatology/37.10.1069. View

Bowman S, Booth D, Platts R, Field A, Rostron J . Validation of the Sicca Symptoms Inventory for clinical studies of Sjögren's syndrome. J Rheumatol. 2003; 30(6):1259-66. View

10.

Ramos-Casals M, Font J, Garcia-Carrasco M, Rosas J, Calvo-Alen J, Pallares L . Primary Sjögren syndrome: hematologic patterns of disease expression. Medicine (Baltimore). 2002; 81(4):281-92. DOI: 10.1097/00005792-200207000-00004. View

11.

Champey J, Corruble E, Gottenberg J, Buhl C, Meyer T, Caudmont C . Quality of life and psychological status in patients with primary Sjögren's syndrome and sicca symptoms without autoimmune features. Arthritis Rheum. 2006; 55(3):451-7. DOI: 10.1002/art.21990. View

12.

Vitali C, Bombardieri S, Jonsson R, Moutsopoulos H, Alexander E, Carsons S . Classification criteria for Sjögren's syndrome: a revised version of the European criteria proposed by the American-European Consensus Group. Ann Rheum Dis. 2002; 61(6):554-8. PMC: 1754137. DOI: 10.1136/ard.61.6.554. View

13.

Harboe E, Tjensvoll A, Maroni S, Goransson L, Greve O, Beyer M . Neuropsychiatric syndromes in patients with systemic lupus erythematosus and primary Sjögren syndrome: a comparative population-based study. Ann Rheum Dis. 2008; 68(10):1541-6. DOI: 10.1136/ard.2008.098301. View

14.

Spezialetti R, Bluestein H, Peter J, Alexander E . Neuropsychiatric disease in Sjögren's syndrome: anti-ribosomal P and anti-neuronal antibodies. Am J Med. 1993; 95(2):153-60. DOI: 10.1016/0002-9343(93)90255-n. View

15.

Keystone E, Burmester G, Furie R, Loveless J, Emery P, Kremer J . Improvement in patient-reported outcomes in a rituximab trial in patients with severe rheumatoid arthritis refractory to anti-tumor necrosis factor therapy. Arthritis Rheum. 2008; 59(6):785-93. DOI: 10.1002/art.23715. View

16.

Valtysdottir S, Gudbjornsson B, Lindqvist U, Hallgren R, Hetta J . Anxiety and depression in patients with primary Sjögren's syndrome. J Rheumatol. 2000; 27(1):165-9. View

17.

Belenguer R, Ramos-Casals M, Brito-Zeron P, Del Pino J, Sentis J, Aguilo S . Influence of clinical and immunological parameters on the health-related quality of life of patients with primary Sjögren's syndrome. Clin Exp Rheumatol. 2005; 23(3):351-6. View

18.

Fox P, Bowman S, Segal B, Vivino F, Murukutla N, Choueiri K . Oral involvement in primary Sjögren syndrome. J Am Dent Assoc. 2008; 139(12):1592-601. DOI: 10.14219/jada.archive.2008.0101. View

19.

Bowman S, Booth D, Platts R . Measurement of fatigue and discomfort in primary Sjogren's syndrome using a new questionnaire tool. Rheumatology (Oxford). 2004; 43(6):758-64. DOI: 10.1093/rheumatology/keh170. View

20.

Cleeland C, Nakamura Y, Mendoza T, Edwards K, Douglas J, Serlin R . Dimensions of the impact of cancer pain in a four country sample: new information from multidimensional scaling. Pain. 1996; 67(2-3):267-73. DOI: 10.1016/0304-3959(96)03131-4. View