September 2023

Understanding the psychological impact of Stevens Johnson Syndrome and Toxic Epidermal Necrolysis in children.

Dr Chris Phillips is a Dermatology trainee at the Churchill Hospital, Oxford. Prior to this he was also a qualified GP. He and his supervisor, Dr Tess McPherson have been awarded a British Skin Foundation Small Grant Award for “A Qualitative Study of the Psychological Morbidity in Paediatric Survivors of Stevens Johnson Syndrome and Toxic Epidermal Necrolysis” 

Here, Chris explains what they hope to achieve by studying this cohort of patients who experienced this very rare disease.

What is Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN)?

SJS is a very rare skin condition which results in blistering of the skin and ulceration of the lips, eyes and genitals. TEN is the more severe form where over 10% of the body surface area is involved.

It is often triggered by viruses and in some cases medications. In its severe form, children can become extremely unwell requiring hospitalisation and intensive care. If the child survives the illness, there are often long term health problems which include scarring of the skin, as well as eye or genital problems.

What aspect of SJS and TEN do we want to study?

So far, no study has looked into the long term psychological impact of SJS/TEN. Our research collated a database of children who had SJS in the past and arranged interviews with them and if possible their parents to explore this further.

By conducting these interviews we seek to gain more understanding about their experience of their illness at the time, as well as what their experience was in the aftermath both physically and psychologically.

Discussing these sensitive issues obviously required careful ethics approval which was granted and we have now completed interviews with 13 children (some of who are now adults) where we were able to delve deep into their experiences.

Why is this research important?

We know how devastating SJS and TEN can be for patients and their families. What we are unaware of is what their experience was like after discharge. What level of physical problems do they still encounter? Did they encounter any flashbacks or post-traumatic stress? Did their parents experience any subsequent mental health problems and was any support offered to them?

How did we analyse the interviews?

This type of research is called qualitative research. Each interview was transcribed and then coded manually using software which involves looking through the interviews for various themes that might be occurring. In essence these patient’s words and experiences form our data.

What have we found so far?

Age range of those interviewed was 10-24 years. Common themes identified included

  • An inadequate follow up plan with a desire for more psychological aftercare.
  • Understanding from parents and children of SJS and its causes was often unclear with some misinformed ideas.
  • Following discharge, children frequently had ongoing physical issues and psychological problems also including anxiety and post-traumatic stress disorder.
  • All parents interviewed cited symptoms of health anxiety and some felt they had developed subsequent mental health issues as a result. The psychological impact of the disease was felt more by the parents than the children.

What were some of the quotes?

Quotes from the parents:

“Yeah, I don’t think I’m the same person I was before it happened, for sure, and I’m just an anxious person and I definitely think I’ve had some post-traumatic stress from it, for sure”

“I think I wrap him up in cottonwool more than other mums would, which is a shame”

“I think certainly afterwards there needs to be a reach out to the parents that have suffered it; especially if they’re not emotional at the time, I think there should be a consultation with them to say, ‘this is going to affect you, and you can’t see [it] happening and [it] not affect you.” 

Quotes from patients:

“Well, when I was first being taken into the hospital, there was loads of thoughts rushing through my head really, like, ‘what’s wrong with me and will I make it through all this?’ It was a daunting start, there weren’t much confidence coming from my head.”

“Yeah, I got tearful a lot, ’cause when I didn’t have it – I wasn’t really that tearful, but after I had it – I was really tearful.”

“It affected me quite badly to be fair. It was like all these other people can do these sports and they can get on with it: play football, join a club, this, that, and the other, and I’m sat here and I don’t have that opportunity.” 

Why will this research be helpful?

Once over the immediate devastation of the disease, through these interviews, we have identified there are still big challenges that lie ahead for these families and many of their needs have been unmet.

We hope through this research we will be able to advise on a more co-ordinated follow up plan, more tailored to the patients and parents individual psychological and physical needs to help them feel more supported and direct them to the care they need.

The generosity of the British Skin Foundation has made this research possible and has shed light on an aspect of this rare but devastating disease in how we can support them and their families better in the aftermath.

Dr Chris Phillips is a Dermatology trainee at the Churchill Hospital, Oxford.

Donate   Marian tells us about being diagnosed with SJS and TENS

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