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

Ugarte‐Gil, Manuel F.; Pons-Estel, Guillermo J.; Vilá, Luis M.; McGwin, Gerald; Alarcón, Graciela S.

doi:10.1136/rmdopen-2019-000955

Cited by 20 publications

(14 citation statements)

References 19 publications

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“…We here confirm that LLDAS is associated with better HRQoL using an SLE-specific instrument. Two very recent studies in the USA and Latin America have demonstrated longitudinal associations between LLDAS and improved HRQoL assessed using the generic SF36 as well as the SLE-specific LupusQoL survey [46,47]. This observed association between LLDAS and improved HRQoL is important given LLDAS is a composite measure of both disease activity and treatment burden and an attainable target for SLE patient treatment.…”

Section: Discussionmentioning

confidence: 94%

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

et al. 2020

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Background: The utility of generic health-related quality of life (HRQoL) questionnaires in patients with systemic lupus erythematosus (SLE) is uncertain. We compared the performance of generic (SF36) and specific (SLEQOL) HRQoL surveys by examining their associations with the Global Rating of Change (GRC) and SLE clinical indicators. Methods: The study included SLE patients who attended a single-center rheumatology clinic between 2013 and 2017. Patients completed both specific (SLEQOL) and generic (SF36) surveys and rated their GRC compared to the previous visit using a 7-point Likert scale on the same day of routine visits. Based on GRC scores, patients' change in HRQoL was categorized as "no change," "deterioration," or "improvement." Disease activity (SLEDAI-2K), flare, and lupus low disease activity state (LLDAS) were assessed at each visit, and organ damage (SDI) was determined annually. Pairwise correlations between SLEQOL and SF36 components were examined, and associations between GRC status and SLE disease indicators were compared using generalized estimating equations (GEE). Results: Three hundred thirty-seven patients with 2062 visits were included in the analysis. SLEQOL correlated significantly with SF36. Patients reported improvements in HRQoL in 58%, deterioration in 15%, and "no change" in 27% of all visits. Compared to the "no change" group, mean SF36 and SLEQOL scores were significantly lower in the deterioration group and higher in the improvement group. The magnitude of changes observed with SLEQOL and SF36 in the deterioration and improvement groups was similar. Patients in LLDAS had significantly higher mean scores in both SLEQOL and SF36. In contrast, patients with active disease, especially those with cutaneous, renal, central nervous system, and musculoskeletal activity, had significantly lower SLEQOL and SF36. Flare and organ damage were also associated with lower SLEQOL and SF36-PCS (physical component) but not with SF36-MCS (mental component). Conclusion: SLEQOL and SF36 similarly describe HRQoL in SLE. Both instruments demonstrated strong associations with GRC-based deterioration or improvement as well as SLE disease status. LLDAS was associated with improved HRQoL.

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Section: Discussionmentioning

confidence: 94%

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

et al. 2020

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“…The findings which highlight that disease activity fully mediated the effects of HCQ on PROs is plausible as higher disease activity often results in impairment of physical, emotional and social health, thereby impairing the QOL and adversely impacting patient’s daily life. 29,30 Evidence affirms that HCQ results in reduced disease activity, 8–11 and HCQ can thereby result in improvements in QOL and decrease the adverse impact of SLE on patients daily lives. These findings can help enhance patient’s acceptability of HCQ, which despite its numerous well-established beneficial effects, remains a major issue in roughly half of the SLE patients due to non-adherence.…”

Section: Discussionmentioning

confidence: 95%

Does hydroxychloroquine improve patient reported outcomes in patients with lupus?

Jolly

Sehgal

Arora

et al. 2021

Lupus

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Background Hydroxychloroquine (HCQ) use is associated with less disease activity, flares, damage and improved survival in Systemic Lupus Erythematosus (SLE). However, its effect on patient reported health outcomes (PROs) such as quality of life (QOL) is not known. Methods International data from Study on Outcomes of Lupus (SOUL) from 2,161 SLE patients were compared by HCQ use. Disease activity and damage were assessed using SELENA-SLEDAI and SLICC-ACR/SDI. QOL was evaluated using LupusPRO and Lupus Impact Tracker (LIT). Linear regression analyses were performed with LupusPRO summary scores health related HRQOL, non-health related NHRQOL and LIT as dependent and HCQ use as independent variable. Analyses were undertaken to test mediation of effects of HCQ use on QOL through disease activity. Results Mean age was 40.5 ± 12.8 years, 93% were women. Sixty-three (1363/2161) percent were on HCQ. On univariate analysis, HCQ use was associated with (a) better QOL (LupusPRO-HRQOL: β 6.19, 95% CI 4.15, 8.24, P ≤ 0.001, LupusPRO NHRQOL: β 5.83, 95% CI 4.02, 7.64, P ≤ 0.001) and less impact on daily life (LIT: β −9.37, 95% CI −12.24, −6.50, P ≤ 0.001). On multivariate and mediational analyses, the effects of HCQ on QOL were indirectly and completely mediated through disease activity. Conclusions HCQ use in SLE is associated with better patient reported health outcomes (LupusPRO-HRQOL and NHRQOL and impact on daily life), and the effects are mediated through disease activity. This information can facilitate patients and physician’s communication with decision-making regarding the use of HCQ for SLE management.

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“…Moreover, enrolled patients had a significantly shorter disease duration compared to our study (1.4 vs 14 years). Finally, the authors used different definitions of remission and low disease activity for their study according to which a stable immunosuppressive treatment was not included in the conditions of remission or low disease activity [30]. The impact of remission duration on patient's quality of life is well exemplified by Mok et al whose study, conducted on a large cohort of SLE Chinese patients with a mean disease duration of 12.6 ± 8.1 years, demonstrated that a durable remission could be achieved in almost a quarter of patients; however, only patients with remission of ≥ 5 years presented a significantly better QoL assessed using both SF-36 and Lupus-PRO [31].…”

Section: Discussionmentioning

confidence: 99%

Articular involvement, steroid treatment and fibromyalgia are the main determinants of patient-physician discordance in systemic lupus erythematosus

et al. 2020

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Background Remission or the lowest possible disease activity is the main target in the management of systemic lupus erythematosus (SLE). Anyway, conflicting data are present in the literature regarding the correlation between physician-driven definitions and patient perception of the disease. The objective of this study is to evaluate the relationship between the definition of lupus low disease activity state (LLDAS) and patient’s health-related quality of life (HRQoL). Methods This is a cross-sectional, monocentric study. Adult SLE patients were included. For each patient, demographics, disease duration, medications, comorbidities, organ damage, active disease manifestations and SELENA-SLEDAI were assessed. Patients have been categorised as follows: LLDAS, remission and active disease. Each patient completed the following patient-reported outcomes (PROs): SF-36, LIT, FACIT-Fatigue and SLAQ. A SLAQ score < 6 (25° percentile of our cohort) was used as the cut-off value to define a low disease activity state according to patient self-evaluation. Results We enrolled 259 consecutive SLE patients (mainly female and Caucasian, mean age 45.33 ± 13.14 years, median disease duration 14 years). 80.3% were in LLDAS, of whom 82.2% were in remission; 19.7% were active. No differences emerged for any of the PROs used between the LLDAS and the active group. Considering the LLDAS subgroup, we identified 56 patients with a subjective low disease activity (SLAQ < 6) and we defined them as “concordant”; the remaining 152 patients in LLDAS presented a subjective active disease (SLAQ ≥ 6) and were defined “discordant”. Discordant patients presented more frequently ongoing and past joint involvement (p < 0.05) and a diagnosis of fibromyalgia (p < 0.01); furthermore, they were more likely to be on glucocorticoid therapy (p < 0.01). Discordant patients showed a significantly poorer HRQoL, assessed by all PROs (p < 0.0001). Conclusions Joint involvement, glucocorticoid therapy and comorbid fibromyalgia resulted to be the most important variables determining the poor concordance between patient and physician perspective on the disease.

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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

Cited by 20 publications

References 19 publications

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

Comparison of performance of specific (SLEQOL) and generic (SF36) health-related quality of life questionnaires and their associations with disease status of systemic lupus erythematosus: a longitudinal study

Does hydroxychloroquine improve patient reported outcomes in patients with lupus?

Articular involvement, steroid treatment and fibromyalgia are the main determinants of patient-physician discordance in systemic lupus erythematosus

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