Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) survivors encounter rare, life-threatening drug reactions and years of physical, emotional and social consequences long after leaving the hospital, according to a study published today in JAMA Dermatology .
Investigators from Vanderbilt University Medical Center's Center for Drug Safety and Immunology (CDSI), in collaboration with the VUMC Qualitative Research Core, conducted one of the largest qualitative studies in the United States exploring SJS/TEN recovery and long-term residual effects from the patients' perspective.
SJS and TEN occur when a medication triggers the immune system to attack the body's own skin and mucous membranes. While most studies have focused on acute medical management, this project captured what happens after discharge by interviewing survivors about the impact of SJS and TEN on their life and home environment.
"By partnering with experts in qualitative research and behavioral science, we were able to truly hear patients in their own words," said senior author Elizabeth Phillips, MD, director of the CDSI, professor of Medicine and holder of the John A. Oates Chair in Clinical Research at VUMC. "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.
Participants' feedback revealed that individuals felt unsupported upon discharge with no guidance or education from providers. They suffered from physical complications including skin conditions and visual impairment as well as psychological impacts such as flashbacks, anxiety and depression. Participants described how initial gratitude for survival gave way to isolation, mistrust and chronic anxiety about medications.
"These findings point to a clear need for coordinated care," said 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."
Funded by the National Institutes of Health (grant R01HG010863), the study builds on VUMC's global leadership in precision drug safety and patient-centered care. The authors emphasize that improving survivor support will require greater physician education, multidisciplinary follow-up, and the integration of patient voices into every stage of care design.
