Patient Experiences of SJS/TEN in Children and Young People
Research type
Research Study
Full title
A Qualitative Study of the Psychological Morbidity in Paediatric Survivors of Stevens Johnson Syndrome and Toxic Epidermal Necrolysis
IRAS ID
275144
Contact name
Tess McPherson
Contact email
Sponsor organisation
Oxford University Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 30 days
Research summary
Stevens Johnson Syndrome (SJS) and its more severe counterpart Toxic Epidermal Necrolysis (TEN) are rare, life-threatening skin conditions which affect 5 people per million population per year. They can affect people at any age, and at the Oxford University Hospitals Dermatology Department, we see approximately one case per year in children and young people (under the age of 18). Whilst children and young people are much more likely to survive this illness than adults, they can be affected by significant long-term complications, such as skin changes including scarring, eye problems and lung damage. In adults, we know that SJS and TEN can cause long term psychological problems. However, as the latest guidelines on SJS and TEN highlights, there has been no research into the psychological effects of these conditions in children.
We propose running a questionnaire and telephone interview study to investigate the patient experiences and psychological effects of SJS and TEN in children and young people who have been treated at Oxford University Hospitals for SJS or TEN over the last 10 years. Questions will focus on their memories of the illness, any sleep disturbance or nightmares about SJS / TEN, their understanding of the condition and its causes, and how this has affected them longer term, including how they feel about doctors, hospitals, and medicines since the event, as well as screen for symptoms of post traumatic stress, anxiety and depression.
This research will help us understand what the experiences of SJS and TEN were for this population, and whether it differs from the adult population. As the psychological effects of skin conditions in children and young people are becoming more appreciated and understood, clinics are beginning to introduce counselling and psychological support for affected patients – this research may highlight another population in whom this support could be beneficial.REC name
London - Hampstead Research Ethics Committee
REC reference
22/PR/0660
Date of REC Opinion
15 Jun 2022
REC opinion
Favourable Opinion