TOPLINE:

A US study found that survivors of Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN) experienced sustained physical symptoms, psychological distress, and social challenges after discharge and often lacked adequate physician guidance and coordinated follow-up care.

METHODOLOGY:

• Researchers conducted a qualitative study that involved phone interviews with 29 adults aged 26-76 years (mean age, 46.3 years; 66% women; 69% White; 17.2% Black) who experienced SJS/TEN from a variety of drugs in the US from July 2021 to August 2023.
• The analysis included a biopsychosocial theory-based framework and hierarchical coding system to understand long-term life impacts.
• Participants had a median of 6 years since the reaction, and 41% were interviewed within 5 years of their SJS/TEN reaction; 76% had severe disease.

TAKEAWAY:

• Survivors described persistent biological symptoms, including skin issues, visual impairment, pain, and loss of functional autonomy.
• Many reported psychological effects such as anxiety, depression, intrusive thoughts, and symptoms consistent with posttraumatic stress disorder.
• Social impacts included strained relationships, career disruption, financial stress, and a sense of isolation.
• Lack of physician knowledge, follow-up coordination, and discharge education contributed to medical distrust.

IN PRACTICE:

Insights from the study “may help improve understanding of long-term complications that are faced by survivors of SJS/TEN,” the authors concluded, citing “care coordination, physician and patient education, and mental health support” as “notable gaps” in the care of SJS/TEN survivors. “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,” they added.

SOURCE:

This study was led by Michelle D. Martin-Pozo, PhD, Center for Drug Safety and Immunology, Vanderbilt University Medical Center, Nashville, Tennessee, and was published online on November 12 in JAMA Dermatology.

LIMITATIONS: 

The sample underrepresented men and racial and ethnic minority groups, and most participants had severe disease.

DISCLOSURES:

This study received funding from the National Institutes of Health. Two authors reported receiving grants and personal fees from the Dermatology Foundation, UpToDate, Lexidrug (UpToDate), Janssen, Verve, Elion, Rapt, Glenmark, Esperion, and Servier outside the submitted work.

This article was created using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.