J Rheum Dis 2019; 26(3): 191-199  
Longitudinal Changes in the European League Against Rheumatism Sjögren's Syndrome Patient Reported Index in Real-Life Practice
Ji Hyoun Kim1, You-Jung Ha2, Eun Ha Kang2, Yeong Wook Song3,4, Yun Jong Lee2,3
Department of Internal Medicine, 1Chungbuk National University Hospital, Cheongju, 2Seoul National University Bundang Hospital, Seongnam, 3Seoul National University College of Medicine, 4WCU Department of Molecular Medicine and Biopharmaceutical Sciences, Medical Research Institute, Seoul National University College of Medicine, Seoul, Korea
Correspondence to: Yun Jong Lee http://orcid.org/0000-0001-7615-8611
Department of Internal Medicine, Seoul National University Bundang Hospital, 82 Gumi-ro 173beon-gil, Bundang-gu, Seongnam 13620, Korea. E-mail:yn35@snu.ac.kr
Received: January 12, 2019; Revised: May 15, 2019; Accepted: May 28, 2019; Published online: July 1, 2019.
© Korean College of Rheumatology. All rights reserved.

This is a open Access article, which permits unrestricted non-commerical use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
Objective. To investigate longitudinal changes in the European League Against Rheumatism (EULAR) Sjögren's syndrome patient reported index (ESSPRI) and to study the clinical features associated with favorable ESSPRI changes in primary Sjögren's syndrome (pSS). Methods. At baseline and after a median period of 6.6 years, 41 pSS patients were evaluated using the ESSPRI, EULAR Sjögren's syndrome disease activity index (ESSDAI), short-form 36, xerostomia inventory (XI), and visual analog scale (VAS) scores for symptoms. The favorable subgroup included patients who were stable or showed improved to satisfactory symptom status (ESSPRI<5) and the unfavorable subgroup included those with stable or worsening to an unsatisfactory symptom status (ESSPRI ≥5). Results. Median ESSPRI increased from 4.11 to 5.33 (p<0.05), although XI scores (p=0.01) and oral dryness (p<0.05) were significantly decreased. Serum immunoglobulin G level was significantly reduced (p<0.001) but ESSDAI scores were unchanged. Six (14.6%) patients showed clinical improvement in ESSDAI, and 11 (26.8%) showed improvement in ESSPRI. On comparing the favorable (n=17) and unfavorable (n=24) subgroups, the former exhibited significantly lower VAS scores for sicca and depression and XI and ESSPRI scores at baseline (all p<0.05) and more lacrimal flow (p<0.05). The favorable subgroup received a significantly lower cumulative dose of pilocarpine and glucocorticoids (both p<0.05). Conclusion. About 25% of pSS patients showed clinically significant ESSPRI improvement and about 40% showed a favorable ESSPRI course. Because the favorable subgroup had more lacrimal flow and less sicca symptoms at baseline, long-term patient-derived outcomes could depend on residual exocrine function at pSS diagnosis.
Keywords: Sj&#246;gren's syndrome, Patient outcome assessment, Quality of life, Xerostomia, Xerophthalmia


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