Long-Term Burdens for SJS/TEN Survivors Highlight Critical Care Gaps

Patients who have experienced Stevens-Johnson syndrome (SJS) and/or toxic epidermal necrolysis (TEN) often face substantial long-term sequelae with little emotional or physical support following hospitalization. In turn, patients often experience feelings of abandonment and depression due to their symptoms and lack of institutional or communal support, according to a recent study published in JAMA Dermatology.1

Given the scarcity of patients with SJS or TEN, more research is needed to understand the implications of long-term sequelae. SJS/TEN is the result of severe, drug-induced, cutaneous adverse reactions, which can often become life-threatening. A diagnosis for TEN constitutes more than 30% of patients' skin being involved, whereas less than 10% is involved in a diagnosis of SJS.2 Nevertheless, patients with either diagnosis deserve necessary care, support, and education to manage the long-term impact of these reactions. SJS/TEN not only impacts the skin, but the likelihood of systemic involvement leading to damage of the lungs, kidneys, and liver is increased.2 Patients can also experience visual impairment, blindness, and other long-term effects impacting function and quality of life. Thus, it increases the need for physical and emotional support after discharge. Yet, survivors of SJS/TEN have reported “inadequate support” in managing chronic physical and physiological symptoms, which puts a strain on patients and their caregivers.1

Survivors of SJS/TEN face severe long-term physical and psychological effects, with major gaps in post-discharge support and care coordination. | Image credit: @Prostock-studio-adobe.stock.jpeg - stock.adobe.com

Gaps in consistent care and follow-up after hospitalization—lack of counseling on future safe medication use—have also led patients and their families to distrust physicians, thus pushing them towards internet resources and support groups specifically for SJS/TEN survivors. Patients were interviewed by trained qualitative researchers between July 2021 and August 2023. The interviews were conducted by phone, and the interview guide had 6 major questions with additional probing questions developed by the study authors in collaboration with the Vanderbilt University Qualitative Research Core.

There were 29 participant interviews included in the final analytic sample. The ages of participants ranged from 26 to 76 years; 66% were female and 69% White, all of whom had experienced SJS/TEN from a wide range of drugs. The median (IQR) time between SJS/TEN incidence and interview was 6 years (4-15 years). Only 41% were interviewed within 5 years of their SJS/TEN incidence, and 76% had severe, overlapping SJS/TEN with more than 10% of their body surface area affected.

Survivors also expressed extreme fatigue from having to navigate daily life with their long-term health consequences. Out of the 29 participants, 13 experienced vision impairment, amongst other symptoms. Chronic physical changes significantly impacted patients’ quality of life and created mental and physical function challenges for patients. Some patients who experienced visual impairment underwent cornea transplants, which allowed them to go back to work for a period of time, but they continued to face setbacks. Another patient expressed her discontent with hyperdependence on her family because her eyesight and frequent seizures prevented her from driving.

Psychologically, many patients described considerable trauma and anxiety during early recovery, as they did not feel prepared to manage their condition after leaving the hospital. Five participants were diagnosed with post-traumatic stress disorder (PTSD), and 10 participants also discussed symptoms associated with PTSD. A common symptom of PTSD makes forming meaningful connections challenging. A total of 6 participants, who were diagnosed with PTSD or experiencing symptoms, said they found it very difficult to relate to others and that it often triggered flashbacks.

Another factor impacting patients’ mental health was related to familial and communal support. Many patients wished there were more education for their families to help them navigate their psychological symptoms. A patient lost her husband because he could not understand her PTSD; others experienced feelings of depression due to a lack of social support in addition to their physical issues.

However, those who did receive social support from their families, friends, and online networks said that it helped them heal from the trauma of their SJS/TEN event. Yet, many still held distrust for the medical system, as they felt unprepared post-discharge. The lack of clear guidance and inadequate knowledge was a significant point of stress for 13 of the participants.

“Reinforcing prior studies, a lack of education and support from their health care teams caused the survivors' anxiety,” the study authors wrote. “A well-documented gap was the need for increased awareness and knowledge of SJS/TEN among physicians.”

The study was limited by gender and race demographics, as male, racial, and ethnic minority populations were underrepresented. Furthermore, only 41% were interviewed within 5 years of their SJS/TEN event, with the remaining 59% potentially biased.

“Care coordination, physician and patient education, and mental health support are notable gaps in care of survivors of SJS/TEN,” the study authors concluded. “It is essential that these critical gaps are addressed with predischarge assessments and planning for better health outcomes and building trust between patients and physicians.”

References

1. Martin-Pozo MD, Williams EA, Bonnet KR, et al. Recovering from Stevens-Johnson syndrome and toxic epidermal necrolysis. JAMA Dermatol. Published online November 12, 2025. doi:10.1001/jamadermatol.2025.4345

2. Ameri AG& K. SJS vs. TEN: What’s the difference and why it matters. SJS Canada. July 8, 2025. Accessed November 20, 2025. https://www.sjscanada.org/post/sjs-vs-ten-what-s-the-difference-and-why-it-matters