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The quality-of-life impact of Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) on patients' lives: an interpretative descriptive qualitative study
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DOI：10.1093/bjd/ljae334.png)
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Abstract
En 中文
Background Much has been documented about the physical sequelae of Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). While less documented, it is recognized 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 (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 QoL 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 QoL assessments following discharge from hospital require consideration. Much has been documented about the physical complications of Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN). Although it is well known that people who experience these conditions can be affected by long-lasting psychological effects, there is a lack of research on the quality of life (QoL) of adults who have been diagnosed with SJS/TEN.This study looked at the experiences of adults who had SJS/TEN and how these experiences impacted their QoL. To do this, we interviewed 18 adults with SJS/TEN and analysed the discussions to identify themes. We found that SJS/TEN impacted all QoL experiences including psychological, physical, social, educational and occupational. This included facing challenges after being discharged from hospital, because of gaps in psychological support and care pathways, and from a lack of coordination of care.Overall, our study findings highlight the significant impact that SJS/TEN can have on a person's QoL. There is a need for further research to focus on the long-term effects of these conditions, to enhance support and care for patients.
Keywords:
COMPLICATIONS
SURVIVORS
MANAGEMENT
ILLNESS
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