Long-term impacts of SJS, TEN investigated

Early stage TEN. Photo by Jay2Base via Wikimedia Commons

Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) may be rare, but for many patients the crisis does not end at hospital discharge. A new qualitative study published in JAMA Dermatology describes years of persistent physical, psychological, and social fallout—and a striking absence of structured post-discharge care.

Investigators at Vanderbilt University Medical Center’s Center for Drug Safety and Immunology (CDSI), working with the VUMC Qualitative Research Core, conducted in-depth interviews with 29 adult SJS/TEN survivors across the United States between July 2021 and August 2023. Participants, who had experienced reactions to a wide range of medications, were asked to describe life after hospitalization, with analysis guided by a biopsychosocial framework and hierarchical coding.

Although many respondents reported feeling well supported during acute care, they described discharge as a turning point into isolation, uncertainty, and fragmented follow-up. Several recounted leaving hospital without clear guidance on anticipated sequelae, recommended surveillance, or how to navigate specialist care.

According to the results of the study, survivors reported chronic skin symptoms, debilitating ocular complications, functional limitations and, in some cases, blindness. These biological sequelae often interfered with activities of daily living and work, amplifying the sense of lost autonomy.​

Psychological effects were equally prominent, including anxiety, obsessive thinking about medications, flashbacks and depressive symptoms. Socially, participants spoke of strained relationships, career disruption and a sustained feeling of abandonment as they attempted to coordinate their own care. ​

“By partnering with experts in qualitative research and behavioural science, we were able to truly hear patients in their own words,” said senior author Elizabeth Phillips, MD, in a press release. “These narratives are extremely powerful and very poignantly reveal the invisible aftermath, loneliness, trauma and fear that follows an underrecognized disease that most clinicians will only encounter once in their entire careers,” she said. Dr. Phillips is director of the CDSI and professor of Medicine at Vanderbilt.​

A recurring theme was medical distrust. Participants frequently turned to the internet for information, citing poor clinician familiarity with SJS/TEN and limited long-term planning at the time of discharge.​

“These findings point to a clear need for coordinated care,” added lead author Michelle Martin-Pozo, PhD, research assistant professor of medicine and program director for the CDSI. “Discharge planning should include mental health referrals, vision follow-up, and education for both patients and families. Survivors need to know what to expect, and that they’re not alone.”

The authors argue that better outcomes will depend on specific SJS/TEN discharge protocols, multidisciplinary follow-up, and enhanced education for both clinicians and patients. Funded by the National Institutes of Health (R01HG010863), the work underscores the need to integrate survivor perspectives into care design and to treat SJS/TEN not as a resolved crisis at discharge, but as the beginning of a prolonged recovery trajectory.