Original Investigation

Recovering From Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis

JAMA Dermatology 10.1001/jamadermatol.2025.4345

November 12, 2025 at 11:00 AM EST

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What are the long-term mental and physical health effects of Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN)?In this qualitative study, survivors of SJS/TEN faced a myriad of biological, psychological, and social impacts associated with SJS/TEN. Survivors expressed medical distrust, particularly due to lack of support and education on what to expect long-term and limited follow-up care.Results of this study suggest that coordination, physician and patient education, and mental health support are gaps in care for survivors of SJS/TEN that need to be addressed for better health outcomes and building trust between patients and their physicians.

Corresponding Author: Elizabeth J. Phillips, MD, Center for Drug Safety and Immunology, Vanderbilt University Medical Center, 2611 West End Ave, Suite 210, Nashville, TN 37203 (elizabeth.j.phillips@vumc.org).

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