O05 A Qualitative Study of the Psychological Morbidity in Paediatric Survivors of Stevens Johnson Syndrome and Toxic Epidermal Necrolysis

Abstract

Abstract Background Steven Johnsons Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but devastating skin conditions. In adults, the long-term psychological sequelae are known(1), however, there is no such research in the paediatric population(2). Objective Our study’s aim was to explore the experiences of children and young people (CYP) and their parents during and after their illness and the subsequent physical and psychological sequelae. Method A retrospective qualitative study with a grounded theory approach was undertaken using detailed semi-structured interviews. 13 CYP and families who had been admitted to a tertiary referral centre were interviewed. Interview transcripts were analysed by three different researchers and themes emerging were identified. Results Age range of those interviewed was 10-24 years. Following discharge, patients frequently had ongoing physical issues and psychological morbidity. Common themes included inadequate information on discharge and a desire for more psychological aftercare for both CYP and parents. SJS/TEN and its causes did not appear to have been clearly explained. While there was marked heterogeneity in the experiences and impact on CYP, all parents interviewed cited symptoms of health anxiety, and some believed they had developed subsequent mental health issues. Conclusion Subsequent physical disability, health anxiety, psychological morbidity and little understanding of SJS/TEN were themes that were prevalent from our interviews. Families desire a more co-ordinated and holistic aftercare plan which may contribute to a better understanding of SJS/TEN as well as give opportunity to address the long-term physical and psychological morbidity of SJS/TEN.