Lupus & antiphospholipid syndrome
A conceptual model of the patient experience of cutaneous lupus erythematosus
Authors' conclusion
This study provides robust patient insights into the signs, symptoms, and impacts of CLE, with skin lesions, itch, skin sensitivity to light, hair loss, and fatigue emerging as most bothersome to patients.
Study context
- Population
- Patients with cutaneous lupus erythematosus (CLE) (discoid lupus erythematosus (DLE) and SCLE) and three expert clinicians, United Statesplus three expert clinicians
- Participants
- 25 patients
- Comparison
- DLE vs SCLE
- DLEn = 15
- SCLEn = 10
- Outcome
- Most frequently reported signs, symptoms and impacts of CLE
Methodological detailssemi-structured concept elicitation interviews, thematic analysis
- Semi-structured concept elicitation interviews
- Thematic analysis
Main finding
As reported in the abstract
- Itch
- n = 25/25
- Skin lesions
- n = 24/25
- Skin sensitivity to light
- n = 23/25
- Skin redness
- n = 22/25
- Skin scaling
- n = 20/25
- Fatigue
- n = 21/25
- Skin crusting, skin pain, joint pain, headaches (each)
- n = 19/25
- Hair loss
- n = 18/25
- Limited social functioning
- n = 22/25
- Body image concerns
- n = 21/25
- Affected family/partner relationships
- n = 19/25
- Recreational/leisure activities
- n = 18/25
- Sleep
- n = 16/25
Further findings
Differences between subtypes
- Key signs, symptoms and impacts generally consistent across SCLE and DLE; DLE reported greater scalp involvement and hair loss
Original publication
A conceptual model of the patient experience of cutaneous lupus erythematosus. Lupus. Published 27 March 2026. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →