PO:13:344 Patient-reported perceptions of corticosteroid effectiveness and safety in systemic lupus erythematosus: a multicenter study

Objectives Glucocorticoids (GCs) have been used for the treatment of systemic lupus erythematosus (SLE) for over 60 years. Current recommendations advocate for the lowest effective dose for the shortest period to reduce adverse effects (AEs). Nevertheless, limited information exists regarding patients’ perspectives on the effectiveness and safety of GC therapy.Aim To explore patients’ perception of the effectiveness and safety of GC treatment in SLE.Methods A cross-sectional survey was conducted among SLE patients fulfilling the 2019 EULAR/ACR classification criteria from four national centers. Data were analyzed using Stata 14.0.Results A total of 272 patients (91% women; mean age 49 years; mean disease duration 5–10 years) were included. Most lived in urban areas (76%) and 59% had at least secondary education. Only 11% had never used GCs. Among the 243 patients with GC exposure, 36% reported use for 1–5 years, 19% for 5–10 years, and 31% for over 10 years. Seventy percent took a median dose of less than 10mg and 3% of >20mg. Most patients (82%) considered GCs very important or essential for disease control. AEs were reported by 58%, most frequently weight gain (78%) and irritability (31%), but 67% believed that benefits outweighed risks. Patients were taking a mean of 2.2 SLE medications; 98% had received hydroxychloroquine and 80% at least one immunosuppressant (including biologics). Compared with other therapies, 27% considered GCs superior and 32% similar. Three-quarters attempted to discontinue GCs, and of these, 66% remained off therapy, mostly for >6 months. Among those who relapsed (34%), half restarted within three months, mainly for arthralgia, malaise, or fatigue. Longer disease duration (>10 years) was associated with more frequent AEs (p = 0.032), and shorter duration (10 mg, p < 0.001). Patients from rural areas were less often advised to stop GCs (p = 0.002), while those with higher education more often perceived benefits outweighing AEs (p < 0.001).Conclusions In this multicenter study, despite known risks, most patients considered glucocorticoids beneficial and worth taking, particularly those with higher educational levels. Understanding patients’ perspectives is essential to support shared decision-making and successful steroid withdrawal strategies.