Patient Experiences, Satisfaction, and Expectations with Current Systemic Lupus Erythematosus Treatment: Results of the SLE-UPDATE Survey

OBJECTIVES: To provide information on systemic lupus erythematosus (SLE) patients’ experiences, satisfaction, and expectations with treatments and examine the association between treatment satisfaction and patient-reported outcomes (PRO). METHODS: A cross-sectional, non-interventional, online survey of US adult patients with SLE was conducted in 2019. The survey consisted of 104 questions about SLE and the following PRO instruments: LupusPRO™, Functional Assessment of Chronic Illness Therapy (FACIT) Fatigue, Work Productivity and Activity Impairment (WPAI), an 11-point Worst Pain Numerical Rating scale (NRS), and an 11-point Worst Joint Pain NRS. RESULTS: Five hundred participants (75% female, 76% White/Caucasian, mean age 42.6 ± 12.7 years, 63% with an associate degree or higher) completed the survey. Most participants were “completely” or “somewhat satisfied” with their treatments, although satisfaction rates were lower for corticosteroids (65%), immunosuppressants (71%), and anti-malarials (55%) than for belimumab (intravenous or subcutaneous) (86%) and rituximab (94%). Treatments were more often considered “burdensome” or “very burdensome” for belimumab (67%) and rituximab (63%) than for corticosteroids (48%), immunosuppressants (49%), and anti-malarials (30%). Pain and productivity assessments supported substantial impairment for the majority of participants, even those who indicated that they were completely satisfied with treatments. The treatment goals most commonly reported as “very important” were reducing fatigue, pain, and the frequency or severity of flares. Three-quarters of participants (76.6%) indicated that their physician’s goals for their therapy matched their own goals “very” or “somewhat closely.” Despite high levels of satisfaction, most participants (63.0%) indicated that their physicians had not asked about their treatment goals during the past 3 months. CONCLUSION: SLE patients reported high rates of satisfaction with current therapies despite identifying substantial treatment burdens, residual pain, and fatigue. Reduced fatigue, pain, and flares were the most important treatment goals for these patients.