SJS/TEN is a severe reaction typically triggered by medications, which causes widespread skin and mucous membrane blistering, and can lead to multi-organ involvement. Despite hospital care being intense, the study highlighted a gap in transition and long-term support once the patients return home.
The study was conducted from July 2021 to August 2023, involved in-depth interviews with 29 adults from across the US. The participants ranged in age from 26 to 76, with 66% identifying as female and 69% as White. They reported developing SJS/TEN from a wide range of commonly prescribed drugs. This research used a biopsychosocial framework to examine life after hospitalization, which reveals extensive long-term complications that significantly alter daily life.
Survivors described receiving supportive care during hospitalization but expressed feeling abandoned and uninformed at discharge. These included chronic skin sensitivity, open wounds, and scarring, but most critically, severe vision problems which ranged from debilitating visual impairment to complete blindness. For some, the physical damage contributed to a loss of independence and functional mobility.
The survivors detailed symptoms consistent with trauma, including anxiety, intrusive thoughts, depression, flashbacks, and persistent fear of medications. Many linked their worsening mental health to inadequate guidance after discharge and the shock of facing permanent disability without professional support.
Socially, the participants described feelings of isolation and a sense of being forgotten once they left the hospital. Some lost jobs or struggled to maintain employment due to physical limitations or visual disability. Several reported strained relationships and increased caregiving burdens on family members.
The patients noted a widespread lack of physician knowledge about SJS/TEN and reported turning to online communities and internet searches to self-manage recovery. Many expressed distrust in the medical community after misdiagnoses or insufficient follow-up care.
Overall, this research emphasize the urgent need for structured post-discharge care plans that include care coordination, mental health support, and SJS/TEN-specific education before patients leave the hospital. This asserted that improving clinician knowledge and discharge protocols is essential to preventing further suffering.
Source:
Martin-Pozo, M. D., Williams, E. A., Bonnet, K. R., Kaffenberger, B. H., Schlundt, D. G., Phillips, E. J., & SJS Survivor Study. (2025). Recovering from Stevens-Johnson syndrome and toxic epidermal necrolysis. JAMA Dermatology (Chicago, Ill.). https://doi.org/10.1001/jamadermatol.2025.4345
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