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

Abstract

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.

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

“…Although the relationship between disease activity and HRQoL in SLE is still controversial [9,26,27], some recent data from the literature would seem to demonstrate a positive impact of the conditions of remission/LLDAS on patients' HRQoL [28], in contrast with our findings. In any case, the results of some of these recent studies are not comparable with this study due to some important differences in the populations included in contrast with our cohort.…”

Longitudinal immune cell monitoring identified CD14++ CD16+ intermediate monocyte as a marker of relapse in patients with ANCA-associated vasculitis

“…Continuous variables were compared using the Mann-Whitney U test, and categorical variables using the chi-squared test. Longitudinal data was analyzed using generalized estimating equations (GEE) [31][32][33], Wilcoxon signed rank sum test, repeated measures analysis of variance (ANOVA), and post hoc test. For GEE, the number of peripheral immune cells were normalized using z-score.…”

Long-term outcomes in systemic lupus erythematosus: trends over time and major contributors

“…This may be achieved through remission and low-disease activity. While a single main definition of low disease activity [the lupus low disease activity state (LLDAS)] has emerged [ 73 ], various definitions for remission have been proposed by different groups [ 74 , 75 ] and the optimal one remains to be determined. Several studies have shown that the risk of damage decreases with the length of time in either LLDAS or remission.…”