The Arabic LupusPRO: A Cross-Cultural Validation of a Disease-Specific Patient-Reported Outcome Tool for Quality of Life in Lupus Patients

Lupus ◽  
2020 ◽  
Vol 29 (13) ◽  
pp. 1727-1735
Author(s):  
Nourhan Elameen Elkaraly ◽  
Samah Ismail Nasef ◽  
Aziza Sayed Omar ◽  
Ahmed Mahmoud Fouad ◽  
Meenakshi Jolly ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Arabic Version ◽  
Systemic Lupus ◽  
Retest Reliability ◽  
Sf 36 ◽  
Patient Reported ◽  
Test Retest Reliability

Objective To translate and cross-culturally adapt the Arabic version of LupusPRO v.1.8 and to test its reliability and validity. Methods LupusPRO was translated into the Arabic language following a standard procedure with forward-backward translation and was tested in patients with systemic lupus erythematosus (SLE) before use. The Arabic version was administered to 107 Egyptian SLE patients, along with a validated Arabic version of RAND 36-Item Health Survey 1.0 (SF-36). The internal consistency and test-retest reliability were determined. Validity was assessed by correlating LupusPRO scores with SF-36, Safety of Estrogens in Lupus Erythematosus National Assessment–Systemic Lupus Erythematosus Disease Activity Index (SELENA-SLEDAI) and Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI). The conceptual framework of the Arabic LupusPRO was evaluated using confirmatory factor analysis (CFA). Results Among the 107 SLE patients, 95% were women with a median (range) age of 32 (18-55) years, median (range) SELENA-SLEDAI of 6 (0-23) and median (range) SDI of 0 (0-6). The Cronbach's alpha for the Arabic LupusPRO ranged from 0.71 to 0.98, except for the social support domain (0.65). Test-retest reliability ranged from 0.95 to 0.99. Convergent validity with corresponding domains of SF 36 was satisfactory. For criterion validity, there was a weak but significant correlation between several LupusPRO domains with SELENA-SLEDAI. CFA showed a good model fit. Conclusion The Arabic version of LupusPRO v1.8 is a reliable and valid tool for measuring quality of life among Arabic speaking SLE patients.

The Japanese LupusPRO: A cross-cultural validation of an outcome measure for lupus

Lupus ◽  
2016 ◽  
Vol 26 (8) ◽  
pp. 849-856 ◽  
Author(s):  
M Inoue ◽  
K Shiozawa ◽  
R Yoshihara ◽  
T Yamane ◽  
Y Shima ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Convergent Validity ◽  
Short Form ◽  
Internal Consistency Reliability ◽  
Systemic Lupus ◽  
Retest Reliability ◽  
Test Retest Reliability

Objective This study aimed to validate the Japanese version of the LupusPRO questionnaire for use with systemic lupus erythematosus patients. Methods Participants were 205 lupus patients recruited from three rheumatology centers in Japan. Demographic data were collected and quality of life was assessed using the LupusPRO and the Short Form Health Survey-12. Disease activity was evaluated by physicians using the Systemic Lupus Erythematosus Activity Index. Some participants completed questionnaires 10–14 days after the first survey. Internal consistency reliability, test-retest reliability, content validity and convergent validity were examined, and confirmatory factor analysis was performed. Results Participants’ mean age was 47.8 ± 13.6 years. Older participants scored lower on physical quality of life and higher on coping than younger participants. The LupusPRO showed satisfactory test-retest reliability ( n = 111). Test-retest reliability was lower for the mental and social aspects of quality of life, indicating fluctuations in quality of life during the two-week interval. Internal consistency reliability was good and convergent validity with the corresponding domains of the Short Form Health Survey-12 was satisfactory. Confirmatory factor analysis showed a good model fit. Conclusion The Japanese LupusPRO is a reliable and valid measure to evaluate treatment interventions for systemic lupus erythematosus.

Validation and verification of the Japanese version of the systemic lupus erythematosus symptom checklist for patient quality of life

Lupus ◽  
2021 ◽  
pp. 096120332110050
Author(s):  
Hiroshi Doi ◽  
Koichiro Ohmura ◽  
Yuya Tabuchi ◽  
Motomu Hashimoto ◽  
Yudai Takase ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Japanese Version ◽  
Physician Global Assessment ◽  
Symptom Checklist ◽  
Systemic Lupus ◽  
Sf 36 ◽  
Patient Reported

Objective The systemic lupus erythematosus (SLE) symptom checklist (SSC) is a patient-reported outcome measure consisting of 38 queries. We translated SSC into Japanese and attempted to validate its usefulness for evaluating the quality of life (QOL) of SLE patients and identify factors that affect QOL. Methods Data from the Medical Outcomes Study Short-form 36 questionnaire (SF-36), Japanese LupusPRO, the Japanese version of the SSC (SSC-J) questionnaire, SLEDAI-2k, and the physician global assessment (PGA) were obtained on the same day from 226 SLE outpatients of the Kyoto Lupus cohort at Kyoto University Hospital. Relationships between the total scores or each item of SSC-J and SF-36, Japanese LupusPRO, SLEDAI-2k, or PGA were analyzed by Spearman’s rank test. Results The total scores of SSC-J correlated with the scores of SF-36 and Japanese LupusPRO. In each item of SSC-J, all 38 items correlated with the physical component summary and mental component summary of SF-36 as well as the Health-Related QOL (HRQOL) scores of Japanese LupusPRO, but not with the non-HRQOL of LupusPRO. SSC-J scores correlated with age, PGA, and corticosteroid doses, but not with SLEDAI-2k. Conclusions SSC-J is suitable as a disease-specific QOL assessment tool for SLE.

scholarly journals Impact of depression on quality of life in systemic lupus erythematosus patients

2021 ◽  
Vol 57 (1) ◽  
Author(s):  
Eman M. Khedr ◽  
Rania M. Gamal ◽  
Sounia M. Rashad ◽  
Mary Yacoub ◽  
Gellan K. Ahmed
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Systemic Lupus ◽  
Positive Correlation ◽  
Depressed Patients ◽  
Sf 36 ◽  
The Impact

Abstract Background Depression is common in systemic lupus erythematosus (SLE) and is an unmeasured risk factor, yet its symptoms can be neglected in standard disease evaluations. The purpose of this study was to assess the frequency and the impact of depression on quality of life in SLE patients. We recruited 32 patients with SLE and 15 healthy control volunteers in the study. The following investigations were undertaken in each patient: clinical and rheumatologic assessment, SLE Disease Activity Index-2k (SLEDAI-2k), Beck Depression Inventory (BDI), Short-Form Health Survey (SF-36) questionnaire, and routine laboratory tests. Results There was a high percentage of depression (46.9%) in the SLE patients. Regarding quality of life (SF-36), there were significant affection of the physical and mental composite summary domains (PCS and MCS) scores in lupus patients compared with controls (P < 0.000 for both) with the same significant in depressed compared with non-depressed patients. SF-36 subscales (physical function, limit emotional, emotional wellbeing, and social function) were significantly affected in depressed lupus patients compared with non-depressed patients. There was a significant negative correlation between the score of MCS domain of SF-36 with BDI (P < 0.000) while positive correlation between SLEDAI score with depression score. In contrast, there were no significant correlations between MCS or PCS with age, duration of illness, or SLEDAI-2K. Conclusions Depression is common in SLE patients and had a negative impact on quality of life particularly on MCS domain and positive correlation with disease severity score. Trial registration This study was registered on clinical trial with registration number: NCT03165682 https://clinicaltrials.gov/ct2/show/NCT03165682 on 24 May 2017.

scholarly journals Time in remission and low disease activity state (LDAS) are associated with a better quality of life in patients with systemic lupus erythematosus: results from LUMINA (LXXIX), a multiethnic, multicentre US cohort

RMD Open ◽  
2019 ◽  
Vol 5 (1) ◽  
pp. e000955 ◽  
Author(s):  
Manuel Francisco Ugarte-Gil ◽  
Guillermo J Pons-Estel ◽  
Luis M Vila ◽  
Gerald McGwin ◽  
Graciela S Alarcón
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Systemic Lupus ◽  
Low Disease Activity ◽  
Sf 36 ◽  
Activity State

AimsTo determine whether the proportion of time systemic lupus erythematosus patients achieve remission/low disease activity state (LDAS) is associated with a better quality of life (QoL).Patients and methodsPatients from a well-established multiethnic, multicentre US cohort were included: remission: Systemic Lupus Activity Measure (SLAM) score=0, prednisone≤5 mg/day and no immunosuppressants); LDAS not in remission, SLAM score≤3, prednisone≤7.5 mg/day, no immunosuppressants; the combined proportion of time patients were in these states was the independent variable. The endpoints were the Physical and Mental Components Summary measures (PCS and MCS, respectively) and the individual subscales of the Short Form (SF)-36 at the last visit. Linear regression was used to estimate the association between the proportion of follow-up time in remission/LDAS and the SF-36 measures with and without adjustment for possible confounders.ResultsFour hundred and eighty-three patients were included. The per cent of time on remission/LDAS was associated with better QoL after adjusting for potential confounders; for the PCS the parameter estimate was 9.47 (p<0.0001), for the MCS 5.89 (p=0.0027), and for the subscales they ranged between 7.51 (p=0.0495) for mental health and 31.79 (p<0.0001) for role physical.ConclusionsThe per cent of time lupus patients stay on remission/LDAS is associated with a better QoL as measured by SF-36.

Patient-reported flare frequency is associated with diminished quality of life and family role functioning in systemic lupus erythematosus

2020 ◽  
Vol 29 (12) ◽  
pp. 3251-3261 ◽  
Author(s):  
Patricia Katz ◽  
George J. Wan ◽  
Paola Daly ◽  
Lauren Topf ◽  
Erin Connolly-Strong ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Family Role ◽  
Role Functioning ◽  
Systemic Lupus ◽  
Patient Reported ◽  
Flare Frequency

Is There an Advantage Over SF-36 with a Quality of Life Measure That Is Specific to Systemic Lupus Erythematosus?

2011 ◽  
Vol 38 (9) ◽  
pp. 1898-1905 ◽  
Author(s):  
ZAHI TOUMA ◽  
DAFNA D. GLADMAN ◽  
DOMINIQUE IBAÑEZ ◽  
MURRAY B. UROWITZ
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Activity Index ◽  
Short Form ◽  
Disease Activity Index ◽  
Systemic Lupus ◽  
Sf 36

Objective.To assess whether the Lupus Quality of Life (LupusQoL) questionnaire contributed additional information not obtained using the Medical Outcomes Study Short-Form 36 questionnaire (SF-36) in a cohort of patients with systemic lupus erythematosus (SLE).Methods.Forty-one patients seen at a single center were followed at monthly intervals for 12 months. The LupusQoL and the SF-36 questionnaires were coadministered monthly. Disease activity was determined by the Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) every 30 days. We determined the correlation of the 4 comparable domains of both questionnaires. For the 4 noncomparable domains of the LupusQoL we determined the correlation between each domain with the Physical Component Summary scores (PCS) and the Mental Component Summary scores (MCS) of the SF-36. The effect size (ES) and the standardized response mean (SRM) were used to compare the responsiveness of both questionnaires when a clinically significant change in disease activity occurred as determined by SLEDAI-2K.Results.Three hundred seventy-six patient visits were recorded. There was a strong correlation between comparable domains in both questionnaires. For the 4 noncomparable domains of the LupusQoL, there was a correlation with the MCS and PCS of SF-36. The mean scores for comparable domains in both questionnaires were similar. Both questionnaires displayed responsiveness, as determined by ES and SRM among patients who flared and improved, but not among patients in remission, when compared to the previous visit.Conclusion.LupusQoL and SF-36 were equivalent in assessing quality of life over time in this group of patients. Both questionnaires are responsive measures of quality of life in patients with SLE flares and improvement.

scholarly journals Validity And Reliability Of Lupus Quality Of Life Questionnaire In Patients With Systemic Lupus Erythematosus In Indonesia

2018 ◽  
Vol 8 (2) ◽  
Author(s):  
Bagus Anindito ◽  
Rudy Hidayat ◽  
Sukamto Koesnoe ◽  
Esthika Dewiasty
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Construct Validity ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Scaling Analysis ◽  
Life Questionnaire ◽  
Systemic Lupus ◽  
Sf 36

Background: The development of Systemic Lupus Erythematosus (SLE) treatment has led the increased of patients survival. Quality of life has became a value based medicine component that should be evaluated in treating SLE. One standardized questionnaire to asses the quality of life in SLE patients is Lupus Quality of Life (Lupus QoL). Currently, in Indonesia, there has not been any spesific questionnaire to asses the quality of life in SLE patients. This study aims to prove that Lupus QoL is valid and reliable to asses the quality of life in SLEpatients in Indonesia.Methods: This study used cross sectional study method. Firstly, we translated the Lupus QoL into Indonesian language, then we tested to 10 respondents. Then, we continued the study with larger sample size. We analyzed the reliability of the test and the re-test result using the interclass coefficient correlation and the internal consistency of the tests using cronbach alpha. Construct validity was evaluated using multi trait scaling analysis and the extrenal validity was evaluated using correlation between domains in short form 36 (SF 36)with Lupus QoL and with disease activity.Results: Data collection was done to 65 SLE patients between October – November 2015 in RSCM. The test has good external validity SF 36 (r=0.38-0.66, p<0.05) and good construct validity (r >0.4; range: 0.44-0.93). The ICC value in one week >0.7 and Cronbach α was>0.7 in each domain. The correlation between lupus QoL and the disease activity was weak and consistentwith other studies.Conclusion: Lupus QoL questionnaire is valid and reliable to asses the quality of life in SLE patients inIndonesia.Key words: Quality of Life, Systemic Lupus Erythematosus, Lupus QoL, Validity, Reliability

EQ-5D and SF-36 Quality of Life Measures in Systemic Lupus Erythematosus: Comparisons with Rheumatoid Arthritis, Noninflammatory Rheumatic Disorders, and Fibromyalgia

2009 ◽  
Vol 37 (2) ◽  
pp. 296-304 ◽  
Author(s):  
FREDERICK WOLFE ◽  
KALEB MICHAUD ◽  
TRACY LI ◽  
ROBERT S. KATZ
Keyword(s):  
Quality Of Life ◽  
Rheumatoid Arthritis ◽  
Mental Health ◽  
Systemic Lupus Erythematosus ◽  
Cost Effectiveness ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Systemic Lupus ◽  
Sf 36

Objective. The Medical Outcomes Study Short-form 36 (SF-36) provides numerical measurement of patient health, but does not include preferences for health states and cannot be used directly in cost-effectiveness analyses. By contrast the Euroqol EQ-5D can be used for cost-effectiveness analyses. The EQ-5D has rarely been used in systemic lupus erythematosus (SLE). We compared SF-36 and EQ-5D values across rheumatic diseases.Methods. We studied 1316 patients with SLE, 13,722 with rheumatoid arthritis (RA), 3623 with non-inflammatory rheumatic disorders (NIRD), and 2733 with fibromyalgia (FM).Results. The mean EQ-5D, physical (PCS) and mental (MCS) component summary scores were 0.72, 36.3, and 44.3, respectively, in SLE. There was essentially no difference among EQ-5D and PCS scores for patients with SLE, RA, or NIRD. MCS was lower in SLE compared with RA and NIRD (44.3, 49.1, 50.8, respectively). All scores were more abnormal in FM (0.61, 31.9, 41.9). Within SF-36 domains, physical function was better, but general health, vitality, social function, role-emotional, and mental health were more impaired in SLE compared with RA and NIRD. In SLE, quality of life (QOL) was predicted by damage, comorbidity, income, education, and age. Fifteen percent of patients with SLE were very satisfied with their health, and their QOL scores (0.84, 45.4, 50.1) were similar to those found in the US population for EQ-5D and MCS, but were slightly reduced for PCS.Conclusion. EQ-5D and PCS are at the same levels in SLE as in RA and NIRD, but are more abnormal in SLE in the MCS and mental health domains. EQ-5D values allow preference-based comparisons with other chronic conditions.

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