The quality-of-life impact of Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) on patients' lives: An interpretative descriptive qualitative study

Background: Much has been documented about the physical sequelae of Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). Whilst less documented, it is recognised that patients can have long lasting psychological sequelae. There is a lack of qualitative research on the quality of life (QoL) experiences of adults who have been diagnosed with SJS/TEN.

Objectives: To explore the experiences of adults who had SJS/TEN and how these experiences relate to their QoL.

Methods: Using an interpretative descriptive qualitative study, a purposive sample of 18 adults with SJS/TEN were interviewed using in depth semi structured interviews. Data were analysed using content analysis.

Results: Two themes were constructed, each with two categories. Theme 1, Psychosocial Impacts included the categories 'The Self and Others', and 'A Changed Perspective on Life'. Theme 2, The Chronicity of Sequelae comprised the categories 'Multi Organ Involvement', and 'Further Consequences of TEN'.

Conclusions: Findings highlighted that SJS/TEN had a significant impact on the different quality-of-life experiences of participants including psychological, physical, social, educational and occupational. Many expressed challenges they faced following discharge from hospital, including gaps in psychological care, navigating disjointed care pathways and lack of coordinated care. If SJS/TEN is viewed as a chronic condition, it is important that researchers and clinicians study the long-term effects of SJS/TEN on people's lives to aid in developing a plan of care to enhance the QoL for this cohort. Psychological and quality of life assessments following discharge from hospital require consideration.