A new qualitative study provides important insights into the long-term physical and psychological burden experienced by survivors of Stevens-Johnson syndrome and toxic epidermal necrolysis (SJS/TEN), underscoring the need for improved post-discharge care pathways and clinician education. While acute management of SJS/TEN is well established, the long-term sequelae and patient experiences after leaving hospital remain poorly characterised.
Researchers analysed in-depth interviews with 29 adults aged 26–76 years who had survived SJS/TEN in the United States. Using a biopsychosocial framework, the researchers found that although patients generally felt supported during hospitalisation, most perceived a sharp drop-off in guidance and coordinated care after discharge.
Persistent Biological Complications of SJS/TEN
Biological repercussions were significant and persistent. Participants reported chronic skin and mucosal symptoms, severe ocular complications, including progressive visual loss and blindness, and reduced functional autonomy. These findings reinforce the importance of long-term dermatologic and ophthalmologic follow-up, areas where standardised pathways remain limited.
Psychological and Emotional Burden of SJS/TEN
Psychologically, survivors described ongoing anxiety, hypervigilance, intrusive memories, and depressive symptoms. Several reported experiences consistent with post-traumatic stress. Socially, participants highlighted isolation, career disruption, and the strain of navigating care systems. A notable theme was medical distrust, driven by perceived gaps in knowledge of SJS/TEN and the lack of anticipatory guidance provided during discharge planning.
Implications for Clinical Practice
From a clinical standpoint, the study identifies clear opportunities for improvement. Standardised discharge protocols, early mental health referral, coordinated follow-up with dermatology and ophthalmology, and patient education about expected long-term outcomes could meaningfully improve survivor wellbeing. Enhanced awareness is also essential, particularly for non-specialists who may be involved in long-term management.
Although the study is limited by its small sample size and qualitative design, it offers valuable patient-centred insights into the unmet needs of SJS/TEN survivors. The authors emphasise that establishing structured, multidisciplinary post-discharge care is critical not only for optimising clinical outcomes but also for rebuilding trust between patients and healthcare providers.
Reference
Martin-Pozo M et al. Recovering from Stevens-Johnson syndrome and toxic epidermal necrolysis. JAMA Dermatol. 2025; doi:10.1001/jamadermatol.2025.4345.
