Cutaneous lupus concerns from the patient perspective: a qualitative study

Area of Science:

• Dermatology
• Psychology
• Quality of Life Research

Background:

• Current quality-of-life tools may not fully capture the unique concerns of patients with cutaneous lupus erythematosus (CLE).
• Qualitative research is needed to understand the patient experience of CLE beyond standard clinical assessments.

Purpose of the Study:

• To formally characterize the specific concerns of patients diagnosed with cutaneous lupus erythematosus (CLE).
• To identify themes related to how CLE impacts patients' daily lives and well-being.

Main Methods:

• Conducted semistructured, qualitative interviews with 16 patients diagnosed with CLE.
• Transcribed, coded, and categorized interview responses to identify recurrent themes.
• Assessed current CLE activity and damage using the Cutaneous Lupus Activity and Severity Index tool.

Main Results:

• Six major themes emerged: Fear of Disease Progression, Unwanted Attention, Self-Consciousness, Physical Signs/Symptoms, Emotional Symptoms, and Functional Decline.
• Self-Consciousness (81.3%), Physical Symptoms (75%), and Fear of Disease Progression (68.8%) were the most frequently reported themes.
• Commonly reported physical signs/symptoms included erythema, itch, dyspigmentation, scarring, and alopecia. Younger patients (<60) reported more emotional symptoms.

Conclusions:

• The identified patient experiences and themes are vital for developing future standardized quality-of-life assessments for CLE.
• These findings highlight important discussion points for healthcare providers regarding patient disease progression and psychological impact.