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Lackner, A; Stradner, MH; Hermann, J; Unger, J; Stamm, T; Graninger, WB; Dejaco, C.
Assessing health-related quality of life in primary Sjögren's syndrome-The PSS-QoL.
Semin Arthritis Rheum. 2018; 48(1):105-110
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Autor/innen der Med Uni Graz:
Dejaco Christian
Graninger Winfried
Hermann Josef
Lackner Angelika
Stradner Martin Helmut
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Abstract:
To develop a questionnaire for the assessment of health-related quality of life (HRQL) in primary Sjögren's syndrome (PSS), and to test its psychometric properties. 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 Sjögren's Syndrome Patient Reported Index (ESSPRI), EULAR Sjögren'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. 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). 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. Copyright © 2017 Elsevier Inc. All rights reserved.
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Aged -
Fatigue - diagnosis
Female -
Humans -
Male -
Middle Aged -
Psychometrics -
Quality of Life -
Reproducibility of Results -
Self Report -
Severity of Illness Index -
Sjogren's Syndrome - diagnosis
Surveys and Questionnaires -

Find related publications in this database (Keywords)
Primary Sjogrens syndrome
Quality of life
Disease-specific questionnaire
Patient-reported outcome
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