Health-related quality of life in patients with systemic lupus erythematosus: a Spanish study based on patient reports.

INTRODUCTION AND OBJECTIVES: Systemic lupus erythematosus (SLE) is a disease that significantly affects the quality of life and welfare of patients. SLE patients can be classified into multimorbidity levels using Clinical Risk Groups (CRGs) to help to incorporate predictive models of health needs. The goal of this study was to correlate CRGs with health-related quality of life (HR-QoL) and costs in SLE patients. METHODS: A questionnaire was administered to SLE patients in four hospital centers of the Valencian Community (Spain) between October 2015 and March 2016. The factors studied included HR-QoL (EQ-5D-5L and VAS), disease activity (SLAI/SELENA), damage (SLICC/ACR), and severity (IGK). RESULTS: The patients (N = 190, 92.06% female, age (mean ± SD) 47.23 ± 13.43 years) were sorted according to health status in nine CRGs. We found that most SLE patients (> 70%) were in CRGs 5 and 6. The main HR-QoL issues in these patients were related to mobility, ability to perform usual activities, and pain/discomfort. The scores (mean ± SD) for EQ-5D-5L and VAS were 0.74 ± 0.25 and 65.67 ± 23.52, respectively. We found that the age of the patients negatively affected their HR-QoL (r = - 0.266). SLE direct costs per patient increased with each CRG group, representing 71.92% of the total costs, while indirect costs were highly variable. The average cost per patient with SLE amounted to €8432.85 (year 2014). CONCLUSIONS: Patients' quality of life is related with age, disease activity, damage, and severity. Age was the parameter which most affects HR-QoL. Most costs of SLE are concentrated in two CRGs in which the HR-QoL deteriorates sharply.

Analysis of disease activity and response to treatment in a large Spanish cohort of patients with systemic lupus erythematosus.

OBJECTIVES: The objectives of this paper are to study the impact of disease activity in a large cohort of patients with systemic lupus erythematosus (SLE) and estimate the rate of response to therapies. METHODS: We conducted a nationwide, retrospective, multicenter, cross-sectional cohort study of 3658 SLE patients. Data on demographics, disease characteristics: activity (SELENA-SLEDAI), damage, severity, hospitalizations and therapies were collected. Factors associated with refractory disease were identified by logistic regression. RESULTS: A total of 3658 patients (90% female; median SLE duration (interquartile range): 10.4 years (5.3-17.1)) were included. At the time of their last evaluation, 14.7% of the patients had moderate-severe SLE (SELENA-SLEDAI score ≥6). There were 1954 (53.4%) patients who were hospitalized for activity at least once over the course of the disease. At some stage, 84.6% and 78.8% of the patients received glucocorticoids and antimalarials, respectively, and 51.3% of the patients received at least one immunosuppressant. Owing to either toxicity or ineffectiveness, cyclophosphamide was withdrawn in 21.5% of the cases, mycophenolate mofetil in 24.9%, azathioprine in 40.2% and methotrexate in 46.8%. At some stage, 7.3% of the patients received at least one biologic. A total of 898 (24.5%) patients had refractory SLE at some stage. Renal, neuropsychiatric, vasculitic, hematological and musculoskeletal involvement, a younger age at diagnosis and male gender were associated with refractory disease. CONCLUSIONS: A significant percentage of patients have moderately-to-severely active SLE at some stage. Disease activity has a big impact in terms of need for treatment and cause of hospitalization. The effectiveness of the standard therapies for reducing disease activity is clearly insufficient. Some clinical features are associated with refractory SLE.