Limitations of current treatments for systemic lupus erythematosus: a patient and physician survey

Abstract

An independent cross-sectional survey assessed systemic lupus erythematosus (SLE) disease and treatment burden. Variables included medication classes prescribed, disease activity, flare occurrences, treatment satisfaction, and validated measures of health-related quality of life (HRQoL), fatigue and work productivity. Of 886 eligible patients (mean age 41.3 years, 89% female), 515 completed the survey. One-third reported moderate-to-severe disease activity, and 31% had flared in the last 12 months. Higher severity of disease activity (moderate-to-severe) was associated with 2 medication classes prescribed and treatment regimens that included corticosteroids (CS) (both p < 0.0001). Patients receiving CS reported lower EQ-5D scores (p ¼ 0.0019) and higher fatigue levels (p < 0.001), and both patients (p ¼ 0.0019) and physicians (p ¼ 0.0001) were less likely to report satisfaction with treatment regimens including CS. Among responders eligible for work (n ¼ 456), severity of disease activity (moderate-tosevere vs. mild) was associated with unemployment (52.9% vs. 40.8%; p ¼ 0.0189), greater impairment in work productivity (36% vs. 21%; p ¼ 0.0003) and participation in daily activities (41% vs. 21%; p < 0.0001). This survey confirms that SLE and current treatment options substantially impair patients' health status and work productivity. Physician-and patientreported satisfaction with current treatment regimens, despite poorly controlled disease activity, indicate they are resigned to the limitations of available SLE treatment regimens. Lupus (2013) 22, 819-826.

Patient- and Physician-reported Satisfaction With Systemic Lupus Erythematosus Treatment in US Clinical Practice

“…In terms of age, sex, and ethnicity, the demographic profile of the patients participating in these studies were consistent with those of other belimumab studies 4,5,7,12 and a previous survey of physicians and patients with SLE that investigated treatment burden. 13 According to physician assessment, in both studies most patients had moderate or severe disease and deteriorating or unstable disease before treatment initiation. In the LPP, 82.9% of physicians and 86.3% of patients were at least somewhat satisfied with belimumab-containing regimens.…”

Patient-reported outcome measures for systemic lupus erythematosus clinical trials: a review of content validity, face validity and psychometric performance

“…Fatigue and pain were identified as two of the most important and frequent symptoms for patients with SLE [24]–[26],[29]–[32] (Figure 1). Specifically, patients describe mental and physical symptoms of fatigue including impacts on social life [24], emotional wellbeing [24],[33], physical functioning [22],[24], sleep [31],[34]–[36] and the ability to complete daily tasks and leisure activities [27],[28].…”

“…Specifically, patients have difficulty maintaining family and sexual relationships [24],[26],[37]. SLE also impacts negatively on patients’ career progression [25], absence from work [22], difficulty concentrating at work or study [22],[26],[32] and their choice of work [26],[27]. …”

Patient-Reported Outcomes in Systemic Lupus Erythematosus

“…The EQ-5D has been primarily used in clinical SLE research studies [47-51]. For example, Strand and colleagues found that SLE patients taking corticosteroids had lower HRQOL, measured by the EQ-5D, than those who were not taking corticosteroids, and concluded that medication side effects contribute to poorer HRQOL in these patients [50]. EQ-5D was also included in the belimumab clinical trials, with changes in patient-reported pain/discomfort domain noted [38].…”