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Assessing health-related quality of life in primary Sjögren's syndrome-The PSS-QoL.

Published on Nov 1, 2017in Seminars in Arthritis and Rheumatism5.072
· DOI :10.1016/J.SEMARTHRIT.2017.11.007
Angelika Lackner5
Estimated H-index: 5
(University of Graz),
Martin H. Stradner12
Estimated H-index: 12
(University of Graz)
+ 4 AuthorsChristian Dejaco29
Estimated H-index: 29
(University of Graz)
Sources
Abstract
Abstract Objectives To develop a questionnaire for the assessment of health-related quality of life (HRQL) in primary Sjogren’s syndrome (PSS), and to test its psychometric properties. Methods Based on the concepts of a previous qualitative study, a questionnaire for the assessment of HRQL in PSS (PSS-QoL) was developed. Psychometric testing of PSS-QoL was performed after revising the first draft with feedback of patients (n = 6) and clinicians (n = 4). Convergent construct validity was assessed by correlating the score with the EULAR Sjogren's Syndrome Patient Reported Index (ESSPRI), EULAR Sjogren's Syndrome Disease Activity Index (ESSDAI) and Euro-QoL 5D (EQ-5D). Reliability was examined by asking patients to complete the questionnaire twice 1–2 weeks apart. An English Version of the PSS-QoL was developed by using standard methodology with forward and back translation. Results Out of the 75 PSS patients, 91% were female, mean (±SD) age was 58.5 ± 12.5 years. PSS-QoL consists of 25 questions and can be divided into two main categories: physical (discomfort and dryness) and psychosocial. The internal consistency of the PSS-QoL revealed a Crohnbach’s α of 0.892. Strong and moderate correlations were found between the PSS-QoL and ESSPRI (corrcoeff = 0.755) and EQ. 5D-pain/discomfort (corrcoeff = 0.531). Reproducibility of the PSS-QoL was high, yielding an ICC of 0.958 (95% CI: 0.926–0.981). Conclusions The PSS-QoL is the first specific tool for the assessment of patients’ HRQL in PSS and showed good psychometric properties. It may serve as a novel patient-reported outcome measure in future clinical studies.
  • References (37)
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References37
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Objectives In Primary Sjogren’s Syndrome (PSS), there is an apparent lack of data concerning the perspectives of patients, their needs, preferences and difficulties of daily life. This qualitative study was conducted to explore perspectives and needs of patients with PSS that influence health related quality of life (HRQL). Methods We recruited 20 PSS patients fulfilling the American-European consensus classification criteria out of the PSS cohort of the Medical University Graz, Austria. In tota...
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