Better Long-Term Care for SJS/TEN Recovery Needed, Study Warns

According to patient interviews, survivors of the life-threatening skin conditions often feel isolated and abandoned by the medical system.

New data suggests there is a crucial need for long-term recovery care for patients treated for severe skin reactions known as Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN).

Researchers published the study in JAMA Dermatology last month, warning that those treated for the conditions reported not having any long-term support from the medical system, despite experiencing physical, emotional and social difficulties after leaving the hospital.

SJS/TEN Medication Reactions

Stevens-Johnson Syndrome is a rare skin reaction typically triggered by taking certain medications, like antibiotics or anticonvulsants. SJS often begins with flu-like symptoms followed by a rash and skin pain. If untreated or diagnosis is delayed, SJS can destroy skin, impair vision and become life-threatening in a matter of hours.

When more than 30% of the skin is affected, SJS can progress to Toxic Epidermal Necrolysis. Symptoms of TEN include widespread blistering and peeling skin and damage to the mucous membrane that looks like a burn.

Side effects of both conditions can include vision impairment, permanent skin damage, sepsis, meningitis, organ failure, acute repository failure and in some cases, death. Treatment requires immediately stopping the drug suspected of causing the condition, administering fluids, preventing infections and managing pain. Corticosteroids and antibiotics are often used, and individuals are typically treated in an intensive care burn unit.

Recent research suggests that Stevens-Johnson Syndrome may be triggered by a wide range of commonly prescribed medications, complicating efforts to predict who may be at risk.

A study published by researchers from the University of Toronto concluded SJS may be triggered by all types of oral antibiotics, no matter which class is prescribed. A study published just last month indicated individuals taking the immunotherapy drug Tevimbra face a much higher risk of developing SJS or TEN.

Individuals who experience SJS/TEN do not return to normal health after being discharged from the hospital. They often need further support during their recovery that the healthcare system does not provide, according to this latest study.

Led by Dr. Michelle D. Martin-Pozo, researchers from Vanderbilt University Medical Center conducted a community-based study of 29 participants aged 26 to 76 years. This SJS Survivors Study conducted semi-structured, in-depth interviews with participants about their SJS/TEN experience post-discharge from the hospital.

Participants were interviewed from July 2021 through August 2023. Analyzing the data, researchers noted that early medical intervention was crucial to reducing their risk of death or life-long health issues.

Although participants reported adequate support while hospitalized, many said they felt isolated after discharge and lacked guidance about the long-term effects of SJS and TEN on themselves and their families.

According to the interviews, SJS/TEN patients experienced long-term physical, emotional and social challenges after leaving the hospital. Many continued suffering ongoing biological symptoms like skin issues, debilitating visual impairment, blindness and lack of functional autonomy.

They also suffered psychological symptoms, including anxiety, obsessive thinking, flashbacks and depression. Some said they felt a sense of abandonment and described negative impacts on their careers. Many of the participants said they felt frustrated and isolated by having to navigate post-hospital care alone and by the lack of support or guidance from doctors.

The interviews indicated doctors and healthcare staff did not give any discharge education or SJS/TEN-specific planning to patients. The researchers determined this was often due to doctors lacking knowledge about the conditions.

SJS/TEN Post-Hospital Care, Education Needed

Overall, survivors of SJS/TEN said their experiences left them with deep medical distrust. Many turned to the internet for guidance after becoming frustrated, instead of to doctors.

Researchers concluded the findings point to the need for better medical coordination, clearer education for clinicians and those affected, and stronger mental health support after discharge, noting that closing these gaps could improve long-term outcomes. They also recommended that care coordination be arranged before discharge to help ensure adequate support once individuals return home.

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