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

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

Author(s):  
Eman M. Khedr ◽  
Rania M. Gamal ◽  
Sounia M. Rashad ◽  
Mary Yacoub ◽  
Gellan K. Ahmed

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.


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

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.


2011 ◽  
Vol 38 (9) ◽  
pp. 1898-1905 ◽  
Author(s):  
ZAHI TOUMA ◽  
DAFNA D. GLADMAN ◽  
DOMINIQUE IBAÑEZ ◽  
MURRAY B. UROWITZ

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.


2009 ◽  
Vol 37 (2) ◽  
pp. 296-304 ◽  
Author(s):  
FREDERICK WOLFE ◽  
KALEB MICHAUD ◽  
TRACY LI ◽  
ROBERT S. KATZ

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.


2019 ◽  
Vol 15 (4) ◽  
pp. 304-311
Author(s):  
Mervat E. Behiry ◽  
Sahar A. Ahmed ◽  
Eman H. Elsebaie

: Systemic Lupus Erythematosus (SLE) has a profound impact on quality of life. Objective: The objective of this study was to explore the quality of life among Egyptian SLE patients and to assess its relationships with demographic and clinical features. Methods: One hundred sixty-four SLE patients were recruited for this study. Demographic information; clinical parameters; disease activity, as evaluated by the systemic lupus erythematosus Disease Activity Index; and organ damage, as assessed by the systemic lupus international Collaborative Clinics/American College of Rheumatology Damage Index, were reported. Quality of life was assessed with a quality of life questionnaire specifically designed for patients with systemic lupus erythematosus; the questions are grouped in the following six domains: physical function, sociooccupational activities, symptoms, treatment, mood, and self-image. Higher values indicate poorer quality of life. Conclusion: Poor quality of life among Egyptian SLE patients and disease activity are strongly related to impaired lifestyles in these patients.


Lupus ◽  
2019 ◽  
Vol 28 (10) ◽  
pp. 1189-1196 ◽  
Author(s):  
N Poomsalood ◽  
P Narongroeknawin ◽  
S Chaiamnuay ◽  
P Asavatanabodee ◽  
R Pakchotanon

Objective The objective of this study was to determine the association between disease activity status and health-related quality of life (HRQoL) in systemic lupus erythematosus (SLE) patients. Methods SLE patients in an out-patient clinic during the previous 12 months were included in the study. The Systemic Lupus Erythematosus-specific Quality-of-Life questionnaire (SLEQoL) was administered at the last visit. Disease activity status was determined retrospectively during the previous year. The categories of disease activity status were defined as: clinical remission (CR): clinical quiescent disease according to Systemic Lupus Erythematosus Disease Activity Index 2000, prednisolone ≤ 5 mg/day; low disease activity (LDA): SLEDAI-2K (without serological domain) ≤ 2, prednisolone ≤ 7.5 mg/day; and non-optimally controlled status: for those who were not in CR/LDA. Immunosuppressive drugs (maintenance dose) and antimalarials were allowed. Prolonged CR or LDA was defined as those with sustained CR or LDA for at least one year. The association between disease activity status and HRQoL was assessed by using regression analysis adjusting for other covariates. Results Of 237 SLE patients, 100 patients (42.2%) achieved prolonged CR, 46 patients (19.4%) achieved prolonged LDA and 91 patients (38.4%) were not in CR/LDA. Non-CR/LDA patients had significantly higher total SLEQoL score and in all domains compared to CR/LDA patients. No significant difference in SLEQoL domain scores was found between CR and LDA groups. Multivariable analysis revealed that non-CR/LDA was positively associated with SLEQoL score compared with CR/LDA (β 20.02, 95% confidence interval (CI) 6.81–33.23, p < 0.003). Moreover, non-CR/LDA was at a higher risk of impaired QoL (SLEQoL score > 80) compared with CR (hazard ratio 3.8; 95% CI 1.82–7.95; p < 0.001). However, there was no significant difference between CR and LDA in terms of SLEQoL score or impaired QoL. Other factors associated with higher SLEQoL score were damage index (β 9.51, 95% CI 3.52–15.49, p = 0.002) and anemia (β 24.99, 95% CI 5.71–44.27, p = 0.01). Conclusion Prolonged CR and LDA are associated with better HRQoL in SLE patients and have a comparable effect. Prolonged CR or optional LDA may be used as the treatment goal of a treat to target approach in SLE.


Lupus ◽  
2017 ◽  
Vol 26 (14) ◽  
pp. 1528-1533 ◽  
Author(s):  
M T Duruöz ◽  
C Unal ◽  
C Sanal Toprak ◽  
İ Sezer ◽  
F Yilmaz ◽  
...  

Background Systemic lupus erythematosus (SLE) may have a profound impact on quality of life. There is increasing interest in measuring quality of life in lupus patients. The purpose of this study was to investigate the validity and reliability of SLE Quality of Life Questionnaire (L-QoL) in Turkish SLE patients. Methods SLE according to 2012 Systemic Lupus International Collaborating Clinics Classification Criteria were recruited into the study. Demographic data, clinical parameters and disease activity measured with the Systemic Lupus Erythematosus Disease Activity Index-2000 (SLEDAI-2K); were noted. Nottingham Health Profile and Health Assessment Questionnaire were filled out in addition to the Turkish L-QoL (LQoL-TR). Internal consistency, test–retest reliability, and convergent and discriminant validity were evaluated. Results The mean age of participants was 43.55 ± 14.33 years and the mean disease duration was 89.8 ± 92.1 months. The patients filled out LQoL-TR in 2.5 min. Strong correlation of LQoL-TR with all subgroups of the Nottingham Health Profile and the Health Assessment Questionnaire were established showing the convergent validity. The highest correlation was demonstrated with emotional reactions (rho = 0.72) and sleep component (rho = 0.65) of the Nottingham Health Profile scale ( p < 0.0001). Its poor and not significant correlation with nonfunctional parameters (age, disease duration, perceived general health, SLEDAI-2K) showed its discriminative properties. LQoL-TR demonstrated good internal reliability with a Cronbach’s α of 0.93 and test–retest reliability with intraclass correlation coefficient of 0.87. Conclusion The LQoL-TR is a practical and useful tool which demonstrates good validity and reliability.


Lupus ◽  
2020 ◽  
Vol 29 (13) ◽  
pp. 1727-1735
Author(s):  
Nourhan Elameen Elkaraly ◽  
Samah Ismail Nasef ◽  
Aziza Sayed Omar ◽  
Ahmed Mahmoud Fouad ◽  
Meenakshi Jolly ◽  
...  

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.


2011 ◽  
Vol 38 (6) ◽  
pp. 1017-1019 ◽  
Author(s):  
AMARIS K. BALITSKY ◽  
VALENTINA PEEVA ◽  
JIANDONG SU ◽  
ELAHEH AGHDASSI ◽  
ERIC YEO ◽  
...  

Objective.To compare health-related quality of life (HRQOL) of patients with antiphospholipid syndrome (APS) and systemic lupus erythematosus (SLE) with and without previous thrombovascular events (TE).Methods.The Medical Outcomes Study Short-Form 36 (SF-36) was used to assess HRQOL in 5 patient groups: (1) primary APS (PAPS; n = 35); (2) APS associated to SLE (SAPS; n = 37); (3) SLE+TE without persistent positive antiphospholipid antibody (SLE+TE–aPL; n = 75); (4) SLE–TE+aPL (n = 71); and (5) SLE–TE–aPL (n = 608).Results.The data on both mental component summary and physical component summary (PCS) scores showed an impaired quality of life in all patient groups. Patients in the SLE+TE–aPL group had a lower PCS score compared to patients in the SLE–TE+aPL group.Conclusion.The combination of SLE and TE has a more negative influence on reported HRQOL, compared to having SLE or APS alone.


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