Reliability of the SF-36 in Japanese patients with systemic lupus erythematosus and its associations with disease activity and damage: a two-consecutive year prospective study

We aimed to validate the reliability of the Medical Outcomes Study Short Form-36 (SF-36) among Japanese patients with systemic lupus erythematosus (SLE). Japanese patients with SLE ( n = 233) completed the SF-36 and other related demographic questionnaires, and physicians simultaneously completed the SLE Disease Activity Index 2000 (SLEDAI-2K) and the Systemic Lupus International Collaborating Clinics Damage Index (SDI). Patients were prospectively followed for a repeat assessment the following year. The SF-36 subscales demonstrated acceptable internal consistency (Cronbach’s α of 0.85–0.89), and an overall good test–retest reliability (intraclass correlation coefficient >0.70). The average baseline SF-36 subscale/summary scores except for “bodily pain” were significantly lower than those of the Japanese general population ( p < 0.05). The SDI showed an inverse correlation with the SF-36 subscale/summary scores except for “vitality” and “mental component summary” at baseline, whereas the SLEDAI-2K did not. In the second year, “social functioning” and “mental component summary” of the SF-36 deteriorated among patients whose SDI or SLEDAI-2K score increased (effect sizes < −0.20). In conclusion, the SF-36 demonstrated acceptable reliability among Japanese patients with SLE. Health-related quality of life measured by the SF-36 was reduced in Japanese patients with SLE and associated with disease damage, rather than disease activity.

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Charlson Comorbidity Index Is Related to Organ Damage in Systemic Lupus Erythematosus: Data from KORean lupus Network (KORNET) Registry

The Journal of Rheumatology ◽

10.3899/jrheum.160900 ◽

2017 ◽

Vol 44 (4) ◽

pp. 452-458 ◽

Cited By ~ 2

Author(s):

Seong-Kyu Kim ◽

Jung-Yoon Choe ◽

Shin-Seok Lee

Keyword(s):

Systemic Lupus Erythematosus ◽

Disease Activity ◽

Lupus Erythematosus ◽

Charlson Comorbidity Index ◽

Short Form ◽

Damage Index ◽

Organ Damage ◽

Systemic Lupus ◽

Sf 36 ◽

Comorbidity Index

Objective.The aim of this study was to identify whether comorbidity status is associated with organ damage in patients with systemic lupus erythematosus (SLE).Methods.A total of 502 patients with SLE enrolled in the KORean lupus Network were consecutively recruited. Data included demographics, age-adjusted Charlson Comorbidity Index (CCIa), disease activity indexes, the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI), the Medical Outcomes Study Short Form-36 health survey (SF-36) score, and the Beck Depression Inventory (BDI) score.Results.Of the total patients, 21.1% (n = 106) experienced organ damage (SDI ≥ 1). Univariate correlation analysis revealed that SDI was not statistically correlated with any clinical variables (correlation coefficient r < 0.3 of all). There were significant differences in the BDI, mental component score of the SF-36, Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), CCIa, C-reactive protein, and mean dose of corticosteroid between non-damage (SDI = 0) and damage (SDI ≥ 1) groups. The presence of damage to at least 1 organ in patients with SLE was found to be closely related with higher CCIa, higher SLEDAI, and mean dose of corticosteroid (OR 1.884, 95% CI 1.372–2.586, p < 0.001; OR 1.114, 95% CI 1.041–1.192, p = 0.002; OR 1.036, 95% CI 1.004–1.068, p = 0.026; respectively) in binary logistic regression analysis.Conclusion.This study suggests that organ damage as assessed by the SDI in Korean patients with SLE is related to comorbidities together with disease activity and corticosteroid exposure.

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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 ◽

10.1136/rmdopen-2019-000955 ◽

2019 ◽

Vol 5 (1) ◽

pp. e000955 ◽

Cited By ~ 4

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.

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Psychometric Properties of the EuroQol-5D and Short Form-6D in Patients with Systemic Lupus Erythematosus

The Journal of Rheumatology ◽

10.3899/jrheum.081022 ◽

2009 ◽

Vol 36 (6) ◽

pp. 1209-1216 ◽

Cited By ~ 50

Author(s):

ROHIT AGGARWAL ◽

CAITLYN T. WILKE ◽

A. SIMON PICKARD ◽

VIKRANT VATS ◽

RACHEL MIKOLAITIS ◽

...

Keyword(s):

Systemic Lupus Erythematosus ◽

Disease Activity ◽

Psychometric Properties ◽

Lupus Erythematosus ◽

Short Form ◽

Systemic Lupus ◽

Component Score ◽

Generic Hrqol ◽

Sf 36 ◽

Euroqol 5D

Objective.Health related quality of life (HRQOL) is an important patient-reported outcome in systemic lupus erythematosus (SLE). We evaluated the psychometric properties of 2 widely used preference-based generic HRQOL measures, EuroQol-5D (EQ-5D) and Short Form-6D (SF-6D), among United States patients with SLE.Methods.Patients with SLE enrolled at an academic institution were assessed for self-reported generic HRQOL (EQ-5D, Medical Outcomes Study SF-36), disease activity, and disease damage SF-6D. Physical Component Score (PCS) and Mental Component Score (MCS) were calculated from SF-36. Criterion validity, convergent validity, and known-groups comparisons were evaluated for EQ-5D and SF-6D. Sensitivity to change (t tests, effect size) was evaluated in a subset of the cohort followed longitudinally.Results.One hundred sixty-seven patients with SLE were enrolled. Related domains on the EQ-5D and SF-36 correlated strongly, e.g., mobility and physical functioning (r = 0.60), whereas unrelated domains showed weak to moderate correlation. EQ-5D index, EQ-5D visual analog scale, and SF-6D score correlated strongly among each other as well as with most domains of SF-36. Both EQ-5D and SF-6D indices differentiated among patients of varied disease severity. EQ-5D and SF-6D were found to be sensitive to self-reported change in health but insensitive to change in disease activity longitudinally. Disease activity and damage showed weak correlation with HRQOL measures.Conclusion.The SF-6D and EQ-5D exhibited satisfactory psychometric properties for use among US patients with SLE. Measures of disease activity and damage were weakly correlated with HRQOL, suggesting that HRQOL is an important complementary source of information about patients with SLE.

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Categorization of Patients With Systemic Lupus Erythematosus Using Disease Activity, Patient-Reported Outcomes and Transcriptomic Signatures

10.21203/rs.3.rs-562655/v1 ◽

2021 ◽

Author(s):

Robin Arcani ◽

Elisabeth Jouve ◽

Laurent Chiche ◽

Noemie Jourde-Chiche

Keyword(s):

Systemic Lupus Erythematosus ◽

Disease Activity ◽

Lupus Erythematosus ◽

Short Form ◽

Depression Symptoms ◽

Systemic Lupus ◽

Sf 36 ◽

Patient Reported

Abstract Objective Patients with systemic lupus erythematosus (SLE) display symptoms that are not always related to disease activity and may distort clinical trial results. Recently, a clinical categorization based on the presence of type 1 (inflammatory manifestations) and/or type 2 (widespread pain, fatigue, depression) symptoms has been proposed in SLE. Our aim was to develop a type 2 score derived from the Short-Form health survey (SF-36) to categorize SLE patients and to compare immunological and transcriptomic profiles between groups. Methods Seventeen items from the SF-36 were selected to build a type 2 score for 50 SLE patients (100 visits; LUPUCE cohort) and the SLEDAI was used to define type 1 symptoms. Patients were categorized in four groups: minimal (no symptoms), type 1, type 2 and mixed (both type 1 and type 2 symptoms). Clinical, immunological and transcriptomic profiles were compared between the groups. Results Type 2 scores ranged from 0 to 31, with a cut-off value of 14 (75th percentile). The sample categorization was: minimal in 39%, type 1 in 37%, type 2 in 9% and mixed in 15%. Type 2 patients were older than minimal patients and had a longer disease duration than type 1 and mixed patients. Immunological data and modular interferon signatures did not differ between the groups. Conclusion Patients with SLE can be categorized into four clinical groups using the SLEDAI score and our SF-36-derived type 2 score. This categorization is non-redundant with immunological or transcriptomic profiles and could prove useful to stratify patients in clinical trials.

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

The Journal of Rheumatology ◽

10.3899/jrheum.110007 ◽

2011 ◽

Vol 38 (9) ◽

pp. 1898-1905 ◽

Cited By ~ 43

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.

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Outcomes of neuropsychiatric events in systemic lupus erythematosus based on clinical phenotypes; prospective data from the Leiden NP SLE cohort

Lupus ◽

10.1177/0961203316689145 ◽

2017 ◽

Vol 26 (5) ◽

pp. 543-551 ◽

Cited By ~ 5

Author(s):

C Magro-Checa ◽

L J J Beaart-van de Voorde ◽

H A M Middelkoop ◽

M L Dane ◽

N J van der Wee ◽

...

Keyword(s):

Systemic Lupus Erythematosus ◽

Clinical Outcome ◽

Disease Activity ◽

Lupus Erythematosus ◽

Short Form ◽

Systemic Lupus ◽

Meaningful Improvement ◽

Neuropsychiatric Systemic Lupus Erythematosus ◽

Sf 36 ◽

Patient Reported

Objective The objective of this study was to assess whether clinical and patient’s reported outcomes are associated with a different pathophysiological origin of neuropsychiatric events presenting in systemic lupus erythematosus. Methods A total of 232 neuropsychiatric events presenting in 131 systemic lupus erythematosus patients were included. Neuropsychiatric systemic lupus erythematosus diagnosis was established per event by multidisciplinary evaluation. All neuropsychiatric events were divided according to a suspected underlying pathophysiological process into one of the following: non-neuropsychiatric systemic lupus erythematosus related, inflammatory and ischaemic neuropsychiatric systemic lupus erythematosus. The clinical outcome of all neuropsychiatric events was determined by a physician-completed four-point Likert scale. Health-related quality of life was measured with the subscales of the patient-generated Short Form 36 (SF-36) health survey questionnaire. The change between scores at paired visits of all domain scores, mental component summary (SF-36 MCS) and physical component summary (SF-36 PCS) scores were retrospectively calculated and used as patient-reported outcome. The association among these outcomes and the different origin of neuropsychiatric events was obtained using multiple logistic regression analysis. Results The clinical status of 26.8% non-neuropsychiatric systemic lupus erythematosus events, 15.8% ischaemic neuropsychiatric systemic lupus erythematosus and 51.6% inflammatory neuropsychiatric systemic lupus erythematosus improved after re-assessment. Almost all SF-36 domains had a positive change at re-assessment in all groups independently of the origin of neuropsychiatric events. Neuropsychiatric systemic lupus erythematosus ( B = 0.502; p < 0.001) and especially inflammatory neuropsychiatric systemic lupus erythematosus ( B = 0.827; p < 0.001) had better clinical outcome, with change in disease activity being the only important predictor. The change in SF-36 MCS was also independently associated with neuropsychiatric systemic lupus erythematosus ( B = 5.783; p < 0.05) and inflammatory neuropsychiatric systemic lupus erythematosus ( B = 11.133; p < 0.001). Disease duration and change in disease activity were the only predictors in both cases. The change in SF-36 PCS was only negatively associated with age. Conclusion Inflammatory neuropsychiatric systemic lupus erythematosus events have better clinical outcome and meaningful improvement in SF-36 MCS than ischaemic neuropsychiatric systemic lupus erythematosus or non-neuropsychiatric systemic lupus erythematosus.

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Use of Antimalarial Agents Is Associated with Favourable Physical Functioning in Patients with Systemic Lupus Erythematosus

Journal of Clinical Medicine ◽

10.3390/jcm9061813 ◽

2020 ◽

Vol 9 (6) ◽

pp. 1813

Author(s):

Alvaro Gomez ◽

Sofia Soukka ◽

Petter Johansson ◽

Emil Åkerström ◽

Sharzad Emamikia ◽

...

Keyword(s):

Systemic Lupus Erythematosus ◽

Physical Functioning ◽

Lupus Erythematosus ◽

Short Form ◽

Bodily Pain ◽

Linear Regression Models ◽

Systemic Lupus ◽

Antimalarial Agents ◽

Sf 36 ◽

The Difference

Impaired health-related quality of life (HRQoL) is a major problem in patients with systemic lupus erythematosus (SLE). Antimalarial agents (AMA) are the cornerstone of SLE therapy, but data on their impact on HRQoL are scarce. We investigated this impact using baseline data from the BLISS-52 (NCT00424476) and BLISS-76 (NCT00410384) trials (n = 1684). HRQoL was self-reported using the Medical Outcomes Study short-form 36 (SF-36), functional assessment of chronic illness therapy (FACIT)-Fatigue and 3-level EuroQoL 5-Dimension (EQ-5D) questionnaires. Patients on AMA (n = 1098/1684) performed better with regard to SF-36 physical component summary, physical functioning, role physical, bodily pain, FACIT-Fatigue, EQ-5D utility index and EQ-5D visual analogue scale scores. The difference in SF-36 physical functioning (mean ± standard deviation (SD): 61.1 ± 24.9 versus 55.0 ± 26.5; p < 0.001) exceeded the minimal clinically important difference (≥5.0). This association remained significant after adjustment for potential confounding factors in linear regression models (standardised coefficient, β = 0.07; p = 0.002). Greater proportions of AMA users than non-users reported no problems in the mobility, self-care, usual activities and anxiety/depression EQ-5D dimensions. AMA use was particularly associated with favourable HRQoL in physical aspects among patients with active mucocutaneous and musculoskeletal disease, and mental aspects among patients with active renal SLE. These results provide support in motivating adherence to AMA therapy. Exploration of causality in the relationship between AMA use and favourable HRQoL in SLE has merit.

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Assessment of Quality of Life (QoL) in Systemic Lupus Erythematosus Patients at a Tertiary Care Hospital in Egypt

Current Rheumatology Reviews ◽

10.2174/1573397115666190118144903 ◽

2019 ◽

Vol 15 (4) ◽

pp. 304-311

Author(s):

Mervat E. Behiry ◽

Sahar A. Ahmed ◽

Eman H. Elsebaie

Keyword(s):

Quality Of Life ◽

Systemic Lupus Erythematosus ◽

Disease Activity ◽

Lupus Erythematosus ◽

Tertiary Care ◽

Damage Index ◽

Life Questionnaire ◽

Care Hospital ◽

Systemic Lupus

: 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.

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Fatigue in patients with systemic lupus erythematosus and neuropsychiatric symptoms is associated with anxiety and depression rather than inflammatory disease activity

Lupus ◽

10.1177/09612033211005014 ◽

2021 ◽

pp. 096120332110050

Author(s):

Rory C Monahan ◽

Liesbeth JJ Beaart-van de Voorde ◽

Jeroen Eikenboom ◽

Rolf Fronczek ◽

Margreet Kloppenburg ◽

...

Keyword(s):

Systemic Lupus Erythematosus ◽

Disease Activity ◽

Lupus Erythematosus ◽

Neuropsychiatric Symptoms ◽

Anxiety And Depression ◽

Systemic Lupus ◽

Sf 36 ◽

Neuropsychiatric Sle ◽

Inflammatory Phenotype ◽

The Mean

Introduction We aimed to investigate risk factors for fatigue in patients with systemic lupus erythematosus (SLE) and neuropsychiatric symptoms in order to identify potential interventional strategies. Methods Patients visiting the neuropsychiatric SLE (NPSLE) clinic of the Leiden University Medical Center between 2007–2019 were included. In a multidisciplinary consensus meeting, SLE patients were classified as having neuropsychiatric symptoms of inflammatory origin (inflammatory phenotype) or other origin (non-inflammatory phenotype). Fatigue was assessed with the SF-36 vitality domain (VT) since 2007 and the multidimensional fatigue inventory (MFI) and visual analogue scale (VAS) since 2011. Patients with a score on the SF-36 VT ≥1 standard deviation (SD) away from the mean of age-related controls of the general population were classified as fatigued; patients ≥2 SD away were classified as extremely fatigued. Disease activity was measured using the SLE disease activity index-2000. The influence of the presence of an inflammatory phenotype, disease activity and symptoms of depression and anxiety as measured by the hospital anxiety and depression scale (HADS) was analyzed using multiple regression analyses corrected for age, sex and education. Results 348 out of 371 eligible patients filled in questionnaires and were included in this study . The majority was female (87%) and the mean age was 43 ± 14 years. 72 patients (21%) had neuropsychiatric symptoms of an inflammatory origin. Fatigue was present in 78% of all patients and extreme fatigue was present in 50% of patients with an inflammatory phenotype vs 46% in the non-inflammatory phenotype. Fatigue was similar in patients with an inflammatory phenotype compared to patients with a non-inflammatory phenotype on the SF-36 VT (β: 0.8 (95% CI −4.8; 6.1) and there was less fatigue in patients with an inflammatory phenotype on the MFI and VAS (β: −3.7 (95% CI: −6.9; −0.5) and β: −1.0 (95% CI −1.6; −0.3)). There was no association between disease activity and fatigue, but symptoms of anxiety and depression (HADS) associated strongly with all fatigue measurements. Conclusion This study suggests that intervention strategies to target fatigue in (NP)SLE patients may need to focus on symptoms of anxiety and depression rather than immunosuppressive treatment.

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

The Egyptian Journal of Neurology Psychiatry and Neurosurgery ◽

10.1186/s41983-021-00343-y ◽

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.

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