Abstract

BackgroundRemission 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).MethodsThis 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.ResultsWe 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).ConclusionsJoint 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.

Highlights

  • Remission or the lowest possible disease activity is the main target in the management of systemic lupus erythematosus (SLE)

  • The lupus low disease activity state (LLDAS) definition and the defined according to the European consensus criteria (DORIS) definition for remission have been applied in our consideration of clinical and serological disease activity and ongoing treatment

  • Two hundred eight of 259 (80.3%) patients satisfied the LLDAS definition, of whom 171 patients were in remission; the remaining 51/259 patients (19.7%) failed to meet the LLDAS definition or remission and were considered active

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Summary

Introduction

Remission or the lowest possible disease activity is the main target in the management of systemic lupus erythematosus (SLE). The main targets of systemic lupus erythematosus (SLE) management are considered to be as follows: attainment of disease remission or the lowest possible level of disease activity, prevention of disease flares and prevention of organ damage [1]. Literature data show that traditional clinical indicators for disease activity and/or organ damage possess only a weak correlation to quality of life (QoL) measures, suggesting that such measures assess different aspects of patient status. This may be due to the existence of discrepancies between patient and physician assessment of SLE disease status. The literature shows some evidence that patients may not be aware of clinically important signs of disease activity if they are not accompanied by symptoms, such as haematological abnormalities or proteinuria, in spite of the fact that the prime focus of physicians is on major organ manifestations

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