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

Abstract

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.

Quick Systemic Lupus Activity Questionnaire (Q-SLAQ): a simplified version of SLAQ for patient-reported disease activity

“…Discordance between patients’ and physicians’ assessment of disease activity has previously been identified. 23 The good correlations between patients’ and physicians’ evaluations in the ‘low-active disease group’ support the possibility that telephone or digital consultations accompanied by Q-SLAQ and laboratory tests can replace some physical visits in selected patients. Though Q-SLAQ has several advantages over the SLAQ, especially in daily clinical practice, the original SLAQ may be more useful in epidemiological or multinational studies, particularly since the SLAQ is translated and validated to many languages.…”

Self-Reported Anxiety and Depression in a Monocentric Cohort of Patients With Systemic Lupus Erythematosus: Analysis of Prevalence, Main Determinants, and Impact on Quality of Life

“…In terms of active disease manifestations, we found that skin lesions were significantly linked to depression in our cohort. It is well-known from the literature that patients’ main concerns are often related to mild manifestations, such as musculoskeletal and mucocutaneous ones, due to their greater impact on patients’ degree of functioning and body image, rather than to major organ involvement and this may determine a discordance between patient and physician assessment of SLE disease status ( 17 , 18 ). Similarly to the results of this study, Eldeiry et al recently observed a prevalence of anxiety and depression of 34% and 27%, respectively, in a cohort of 341 SLE patients.…”

One year in review 2021: systemic lupus erythematosus

“…According to a recent study (71), past and ongoing joint involvement, a concomitant diagnosis of fibromyalgia and ongoing glucocorticoid treatment may represent the most important variables determining the poor concordance between patient and physician perspective on the disease. Actually, chronic pain represents a pervasive symptom in SLE patients.…”

“…• Clinical remission is attainable in real life, for patients who are unable to reach clinical remission, LLDAS is an alternative target of treatment, being able to reduce severe damage accrual (59-65); • The LupusPRO survey tool was more sensitive than generic SF-36 scare in recognising changes of disease activity and organ damage (67); • Anxiety, depression, chronic pain and fatigue have a negative impact on patients' quality of life and should therefore be assessed and properly treated; patients should be educated and encouraged to self-empowerment (67)(68)(69)(70)(71)(72)(73).…”