scholarly journals Quality of Life in Systemic Lupus Erythematosus

2006 ◽  
Vol 13 (2-4) ◽  
pp. 321-324 ◽  
Author(s):  
Pantelis Panopalis ◽  
Ann E. Clarke
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Improve Patient Care ◽  
Well Being ◽  
Systemic Lupus ◽  
Generic Measures ◽  
Disease Specific

Systemic lupus erythematosus (SLE) is a pervasive disease with wide-ranging effects on physical, psychological and social well-being. As such, a comprehensive assessment of SLE should include several different outcomes, such as quality of life (QoL) and economic costs, in addition to measures of disease activity and damage. In fact, disease effects on QoL are often considered of greater overall importance to patients. Two approaches have been used in the measurement of QoL: generic questionnaires and disease-specific questionnaires. Generic questionnaires are designed to be used across various conditions and populations, whereas disease-specific questionnaires are designed to measure outcomes in one specific disease or condition. The most commonly used measure of QoL is the Medical Outcomes Study Short Form 36 (SF-36), which is a generic measure that is applicable in a variety of conditions, including SLE. Recently, SLE-specific measures have been developed that may prove to be more responsive than generic measures. The hope is that improved outcome measures will allow for better assessment of SLE and eventually facilitate drug development and improve patient care.

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 THE BENEFITS OF FOLLOW-UP BY THE MULTIDISCIPLINARY TEAM IN HEALTH FOR PEOPLE WITH SYSTEMIC LUPUS ERYTHEMATOSUS

2021 ◽  
pp. 17
Author(s):  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Joint Stiffness ◽  
Well Being ◽  
Support Network ◽  
Physical Conditioning ◽  
Systemic Lupus ◽  
Health Team

Objective: Discuss the benefits of monitoring by a multidisciplinary health team for the treatment of patients with systemic lupus erythematosus. Methods: The research proposal is based on a review of bibliographic references, with a source of synthesizing results obtained through secondary research on the theme, in a methodical and orderly manner, seeking to contribute to the knowledge on the proposed subject. Results: Through a thorough analysis of theoretical references, 30 scientific articles were selected that alluded to the systemic lupus erythematosus pathology. Systemic lupus is characterized by articular, cutaneous, renal, vascular, serous, nervous manifestations, decreased mobility, muscle strength, physical conditioning and quality of sleep, increased joint stiffness, pain and fatigue and can cause, even depression, obesity and / or malnutrition, impacting quality of life. Conclusion: The research presented relevant results on the monitoring by the multidisciplinary health team for the treatment of patients diagnosed with systemic lupus erythematosus, presenting data that justify the construction of a structured support network, which will contribute to the therapy of this patient, providing well-being and improvements in quality of life. Taking into account the situation that the pathology presents, these data are at least disturbing. These bases made it possible to expand the discernment on the subject, opening a succession of discussions to find proposals and resolutions that can corroborate with the treatment of people diagnosed with chronic diseases such as SLE.

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.

Thrombovascular Events Affect Quality of Life in Patients with Systemic Lupus Erythematosus

2011 ◽  
Vol 38 (6) ◽  
pp. 1017-1019 ◽  
Author(s):  
AMARIS K. BALITSKY ◽  
VALENTINA PEEVA ◽  
JIANDONG SU ◽  
ELAHEH AGHDASSI ◽  
ERIC YEO ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Negative Influence ◽  
Antiphospholipid Antibody ◽  
Systemic Lupus ◽  
Related Quality ◽  
Patient Groups

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.

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

scholarly journals Parameters of the internal picture of the disease and quality of life in patients with systemic lupus erythematosus

2020 ◽  
Vol 14 (3) ◽  
pp. 57-62
Author(s):  
V. M. Yaltonsky ◽  
I. N. Abrosimov ◽  
T. D. Andrushkevich ◽  
E. M. Shashurina ◽  
S. K. Solovyev ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Personal Control ◽  
Well Being ◽  
Systemic Lupus ◽  
Group 2 ◽  
Threat To Life ◽  
Group 1

Objective: to analyze the structural features of the internal picture of the disease (IPD in patients with systemic lupus erythematosus (SLE) and its ratio with quality of life (QOL) as an indicator of adaptation to the disease.Patients and methods. The investigation enrolled 51 patients with SLE. Comparison groups included patients differing in the psychological parameter – the perception of the existing disease as a threat to life and health: Group 1 (n=17) regarded their disease as a moderate threat to life and well-being; Group 2 (n=34) considered it as a severe threat.Results and discussion. Comparative analysis of the cognitive level of IPD revealed statistically significant differences between the patients of Groups 1 and 2 in the following scales: «course of the disease» (p<0.001), «personal control» (p<0.001), «treatment control» (p<0.001), «understandability of the disease» (p<0.001), «emotional response to the disease» (p<0.005), and «overall level of disease threats» (p<0.001). It turned out that Group 1 patients better understood the features of the course and manifestation of the disease, were more confident in the efficiency and importance of the treatment prescribed, as well as in their own capabilities to improve their health status. Group 2 patients were more inclined to try to cope with the existing negative experiences, by avoiding the problem.Conclusion. IPD can be different in patients with SLE. The perception of illness as a severe threat negatively affects the efficiency of therapy, mental well-being, social activity, and ultimately QOL. The findings can be used to develop programs for psychological support of patients with rheumatic diseases, in particular those with SLE.

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.

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.

Sign in / Sign up

Export Citation Format

Share Document