Diagnostic delays and disease burden in CLE

Results from secondary analyses of two multilingual, anonymous, cross-sectional online surveys conducted by Lupus Europe (2020 [n = 342] and 2024 [n = 277]) examining diagnostic delay and disease burden in patients with cutaneous lupus erythematosus (CLE) without systemic lupus erythematosus (SLE) were published in the Journal of the European Academy of Dermatology and Venereology by Teboul et al. 

Key data: In the 2020 survey, the median diagnostic delay was 2 years, with 22.2% of patients reporting delays exceeding 6 years. Patients with longer delays more frequently received an alternative or incorrect diagnosis before CLE recognition (60.8% vs 35.3%; p < 0.001) and more frequently reported prior fibromyalgia (9.2% vs 1.0%; p = 0.001) and psychiatric or mental health diagnoses (20.8% vs 4.0%; p < 0.001). Among 277 patients in 2024, active skin lesions (63.5%), fatigue (62.5%), and photosensitivity (60.6%) were the most frequently reported symptoms. Fatigue was identified as one of the most bothersome CLE symptoms in the 2020 survey (p = 0.01) and in the 2024 survey was the leading unmet need (30.7%) and the symptom most often considered insufficiently addressed by healthcare professionals (HCPs). Overall burden, reported on a 0–10 scale, was high in respondents with CLE and comparable to that reported by patients with SLE (mean, 6.69 vs 6.94; p = 0.07). 

Key learning: Patients with CLE may experience substantial diagnostic delays and high disease burden beyond visible lesions; greater awareness of CLE presentations, clearer referral pathways, and routine assessment of fatigue and psychosocial impact may support more patient-centered dermatology care for patients with CLE.