A conceptual model of the patient experience of cutaneous lupus erythematosus.

This article focuses on characterizing the patient experience of cutaneous lupus erythematosus (CLE), specifically its two prevalent subtypes: discoid lupus erythematosus (DLE) and subacute CLE (SCLE), through qualitative interviews with patients and clinicians in the United States. Key signs and symptoms identified as most bothersome include itch, skin lesions, photosensitivity, hair loss, and fatigue, while major impacts involve limited social functioning, body image concerns, and affected relationships. The study developed a comprehensive conceptual model capturing these core signs, symptoms, and impacts, noting subtype-specific differences such as greater scalp involvement and hair loss in DLE. Findings highlight limitations in existing patient-reported outcome (PRO) instruments for CLE and support the need for a novel, fit-for-purpose PRO to better assess treatment benefits in clinical trials.