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      Health-related quality of life in systemic sclerosis compared with other rheumatic diseases: a cross-sectional study

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          Abstract

          Background

          Systemic sclerosis (SSc) is a rare autoimmune disease characterized by fibrosis of the skin and the involvement of multiple internal organs. Previous studies reported poorer health-related quality of life (HRQoL) in patients with SSc compared with the general population. However, very little is known about how HRQoL in SSc patients compares with that in patients with other systemic autoimmune diseases, such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and Sjogren’s syndrome (SjS). Thus, the main aim of this study was to compare HRQoL in SSc patients, patients with other rheumatic diseases, and the general population.

          Methods

          In this cross-sectional study, patients from the rheumatology clinics of Seoul National University Hospital with SSc, RA, SLE, and SjS were enrolled via a random sampling technique. HRQoL was captured by the Short Form (36) health survey (SF-36), the Short Form Six-Dimensional health index (SF-6D), and the EuroQol Five-Dimensional descriptive system (EQ-5D). Demographic characteristics and standardized disease activity for each disease were also obtained. Previously reported data from 600 healthy Koreans were used for the healthy controls. An ANCOVA test was used to compare the SF-36, SF-6D, and EQ-5D values between study subjects with adjustments for age, sex, disease duration, comorbidities, and disease activity status.

          Results

          One hundred twenty patients were included in each of the SSc, RA, SLE, and SjS cohorts. Patients with rheumatic diseases had significantly lower SF-36, SF-6D, and EQ-5D scores than healthy controls (all P < 0.001). After statistical adjustments, SSc patients reported significantly lower mental component summary (MCS) scores than patients with RA ( P < 0.001) or SLE ( P = 0.001). Specifically, the mental health and general health domains were significantly lower in SSc patients than reported in RA or SLE patients ( P < 0.001 and P = 0.001, respectively, in both domains). In SSc patients, higher modified Rodnan skin scores (mRSS) correlated with lower MCS scores.

          Conclusions

          SSc patients report poorer HRQoL than patients with RA or SLE. The extent of skin involvement is associated with poorer HRQoL in SSc patients.

          Trial registration

          NCT03257878. Registered 22 August 2017

          Electronic supplementary material

          The online version of this article (10.1186/s13075-019-1842-x) contains supplementary material, which is available to authorized users.

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          Most cited references29

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          EULAR Sjogren's syndrome disease activity index: development of a consensus systemic disease activity index for primary Sjogren's syndrome.

          To develop a disease activity index for patients with primary Sjögren's syndrome (SS): the European League Against Rheumatism (EULAR) Sjögren's syndrome disease activity index (ESSDAI). Thirty-nine SS experts participated in an international collaboration, promoted by EULAR, to develop the ESSDAI. Experts identified 12 organ-specific 'domains' contributing to disease activity. For each domain, features of disease activity were classified in three or four levels according to their severity. Data abstracted from 96 patients with systemic complications of primary SS were used to generate 702 realistic vignettes for which all possible systemic complications were represented. Using the 0-10 physician global assessment (PhGA) scale, each expert scored the disease activity of five patient profiles and 20 realistic vignettes. Multiple regression modelling, with PhGA used as the dependent variable, was used to estimate the weight of each domain. All 12 domains were significantly associated with disease activity in the multivariate model, domain weights ranged from 1 to 6. The ESSDAI scores varied from 2 to 47 and were significantly correlated with PhGA for both real patient profiles and realistic vignettes (r=0.61 and r=0.58, respectively, p<0.001). Compared with 57 (59.4%) of the real patient profiles, 468 (66.7%) of the realistic vignettes were considered likely or very likely to be true. The ESSDAI is a clinical index designed to measure disease activity in patients with primary SS. Once validated, such a standardised evaluation of primary SS should facilitate clinical research and be helpful as an outcome measure in clinical trials.
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            South Korean time trade-off values for EQ-5D health states: modeling with observed values for 101 health states.

            This study establishes the South Korean population-based preference weights for EQ-5D based on values elicited from a representative national sample using the time trade-off (TTO) method. The data for this paper came from a South Korean EQ-5D valuation study where 1307 representative respondents were invited to participate and a total of 101 health states defined by the EQ-5D descriptive system were directly valued. Both aggregate and individual level modeling were conducted to generate values for all 243 health states defined by EQ-5D. Various regression techniques and model specifications were also examined in order to produce the best fit model. Final model selection was based on minimizing the difference between the observed and estimated value for each health state. The N3 model yielded the best fit for the observed TTO value at the aggregate level. It had a mean absolute error of 0.029 and only 15 predictions out of 101 had errors exceeding 0.05 in absolute magnitude. The study successfully establishes South Korean population-based preference weights for the EQ-5D. The value set derived here is based on a representative population sample, limiting the interpolation space and possessing better model performance. Thus, this EQ-5D value set should be given preference for use with the South Korean population.
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              Development of the Korean version of Short-Form 36-Item Health Survey: health related QOL of healthy elderly people and elderly patients in Korea.

              The health-related QOL (HRQOL) has been used extensively in clinical and epidemiological research and health service studies. Especially, the Medical Outcome Study Short-form 36-Item Health Survey (SF-36) is a widely used health status measure. However, a Korean version has not been developed and tested yet. The purpose of this study was to develop a Korean version of the Short-form Health Survey (SF-36) for use in health related quality of life measurements for Korean elderly people. SF-36 data from 90 healthy elderly people using Social Education Service and 120 elderly patients using a day care service in Seoul, Korea, were examined. We translated SF-36 version 2.0 into Korean and assessed its reliability and validity. In the results, the content validity and discriminant validity were found to be satisfactory. Cronbach's alpha coefficients ranged from 0.9298 to 0.9383. The test-retest reliability coefficients ranged from 0.710 to 0.895. In addition, the utility was examined by testing the correlation between the health-related QOL and related factors (sex, age, motor function, ability of daily life) among the elderly people. The present findings suggested that the Korean version of SF-36 would be useful as a measure of the health related QOL in Korean elderly people.
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                Author and article information

                Contributors
                eunpong7@naver.com
                vstrand@stanford.edu
                yjgark640@naver.com
                ysong@snu.ac.kr
                +822 2072 3944 , leb7616@snu.ac.kr
                Journal
                Arthritis Res Ther
                Arthritis Res. Ther
                Arthritis Research & Therapy
                BioMed Central (London )
                1478-6354
                1478-6362
                15 February 2019
                15 February 2019
                2019
                : 21
                : 61
                Affiliations
                [1 ]ISNI 0000 0004 0470 5905, GRID grid.31501.36, Division of Rheumatology, Department of Internal Medicine, , Seoul National University College of Medicine, ; Seoul, 03080 Republic of Korea
                [2 ]ISNI 0000000419368956, GRID grid.168010.e, Division of Immunology/Rheumatology, , Stanford University, ; Palo Alto, CA USA
                [3 ]ISNI 0000 0004 1803 0072, GRID grid.412011.7, Department of Internal Medicine, , Kangwon National University Hospital, ; Chuncheon-si, Republic of Korea
                Article
                1842
                10.1186/s13075-019-1842-x
                6377714
                30770765
                a9923ec7-693e-4481-bc83-55eb86a208f5
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 29 August 2018
                : 4 February 2019
                Funding
                Funded by: National Research Foundation of Korea
                Award ID: 2016R1D1A1A02937044
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

                Orthopedics
                systemic sclerosis,quality of life,disability
                Orthopedics
                systemic sclerosis, quality of life, disability

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