Lupus Remission: How Do Patient and Physician Perceptions Align?

OBJECTIVE: Clinical remission is a major therapeutic goal in systemic lupus erythematosus (SLE) because of its association with improved long-term outcomes. However, its relationship with patient-reported burden, quality of life, and disease perception remains incompletely understood. This study aimed to evaluate patient-reported outcomes (PROs) in patients with SLE in clinical remission, identify factors associated with impaired health-related quality of life (HRQoL), and assess physician-patient discordance in disease activity perception. METHODS: A total of 106 adult patients with SLE in clinical remission according to the definition proposed by Zen et al. were enrolled at a single rheumatology center. Patients were classified into complete remission, clinical remission off corticosteroids, or clinical remission on corticosteroids. Demographic, clinical, and treatment-related data were collected, including organ damage (SLICC-SDI) and disease activity (SLEDAI-2K). Patients completed PRO measures including SF-36, Global Health (GH), pain VAS, STAI-Y1 and STAI-Y2, Zung Depression Scale, Insomnia Severity Index, and HAQ. Disease activity was assessed by both the patient (PGA) and the physician (PhGA); a PGA-PhGA difference >25 mm was considered clinically relevant discordance. RESULTS: Among patients in clinical remission, mild anxiety was observed in 17.1% according to STAI-Y1 and in 27.9% according to STAI-Y2, mild-to-moderate depressive symptoms in 47.1%, and mild insomnia in 25.5%. Of the 106 patients, 24 (22.6%) were in complete remission, 27 (25.5%) in clinical remission off corticosteroids, and 55 (51.9%) in clinical remission on corticosteroids. Patients in clinical remission on corticosteroids showed worse patient-reported outcomes than those in complete remission or clinical remission off corticosteroids. In multivariable analyses, poorer physical HRQoL was independently associated with functional disability, pain intensity, and depressive symptoms, whereas poorer mental HRQoL was independently associated with trait and state anxiety. Clinically relevant physician-patient discordance was observed in 22.6% of the cohort and was almost exclusively driven by higher patient than physician scores. Pain intensity emerged as the most robust independent correlate of discordance. CONCLUSIONS: A substantial patient-reported burden may persist in patients with SLE despite clinical remission. Pain, psychological distress, insomnia, and functional disability contribute to impaired HRQoL, while physician-patient discordance appears to reflect a broader mismatch between inflammatory disease control and the patient's lived experience of illness. These findings support a more comprehensive and patient-centered approach to remission assessment in SLE.