Health-Related Quality of Life in Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis: A Qualitative Study

Background: Epidermal necrolysis (EN), including Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), are severe cutaneous drug reactions with high morbidity. However, the quality of life (QoL) impact during acute hospitalization is not well understood. Objectives: To explore the acute QoL experience of EN patients and identify key domains to inform future QoL assessment tools and improve care. Methods: Twelve patients with confirmed EN were interviewed using a standardized script. Diagnoses were supported by histopathology and validated scoring systems. Interviews were analyzed thematically using NVivo software. Thematic saturation was reached after nine interviews. Results: Six QoL domains emerged: difficulties with activities of daily living, severe cutaneous symptoms, changes in physical appearance, painful oral symptoms, mental health challenges (e.g., anxiety, low mood), and medical distrust. Trimethoprim-sulfamethoxazole was the most common culprit drug. All patients received systemic corticosteroids. Conclusions: These findings lay the groundwork for the development and validation of targeted quality-of-life assessment tools and support the need for holistic inpatient care strategies tailored to the physical, emotional, and relational disruptions experienced by patients with acute EN.