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Mental health Interventions for Children with Epilepsy

Prof Isobel Heyman: As a child psychiatrist I’ve worked for many years with children with epilepsy and I think it was just such a pleasure to be involved in the MICE trial because it fully integrated physical and mental health. It meant that we could deliver mental health input actually within the epilepsy clinics, children didn’t have to be referred somewhere different. And I think that had a huge impact on reducing stigma, it just meant their mental health needs were one other aspect of their care.

Dr Sophia Varadkar: And, so I am a paediatric neurologist, so I would be the consultant in the clinic meeting the family, meeting the child or the young person and while I could help and give advice on the treatment of the epilepsy with drugs or non-drug treatments, the whole life for that child and that family is so much more than the epilepsy and the drugs. It is school, it’s sleep, it’s appetite, it’s friends, it’s what you want to do, go on holiday, see grandparents. And so many times you would get a reply about, you’ve got the treat the seizures first, when the seizures are under control then there will be help, and we knew as professionals for so long with all the teams that actually you could help. And what is brilliant about this trial is that it really shows now that you can help really effectively and really well and you don’t have to wait for the epilepsy to be treated. And I think to me that has just been such an amazing thing.

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This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.

Researchers evaluated an intervention (remote assessment and delivery of psychological treatment) for children with epilepsy who have mental health difficulties. It was delivered by epilepsy clinicians with limited formal training in psychological interventions.

Compared with usual care, when clinicians used the intervention:

  • young people had improved mental health at 6 and 12 months, and their lives were less impacted by mental health problems
  • parents or carers had slightly improved mental health at 6 months.

The results demonstrate the possibility of treating mental health difficulties within the physical healthcare service, the researchers say.

More information about epilepsy can be found on the NHS website.

The issue: many children with epilepsy have poor mental health

Around 1 in 220 children in the UK have epilepsy (bursts of electrical activity in the brain which temporarily affect how it works). Symptoms vary but can include a loss of awareness, collapsing or passing out. The condition is often lifelong.

Many children with epilepsy (up to 60%) also have poor mental health; those with a combination of both are likely to have reduced quality of life.

Addressing mental and physical health needs at the same time can be difficult in practice. Treatment centres for physical health conditions (such as epilepsy) do not typically assess people’s mental health and they may not have mental health specialists on the clinical team. Usual care can vary but typically children and young people are either referred to child and adolescent mental health services (CAMHS) or hospital-based psychology services.

Researchers modified a talking therapy, CBT (cognitive behavioural therapy) specifically for young people who have epilepsy and poor mental health. They then trained a range of clinicians (including paediatricians, epilepsy nurse specialists and assistant psychologists) to use the new intervention. Clinicians attended a one-week training workshop and were supervised closely as they delivered assessment and psychological treatment for at least one young person.

This approach (the Mental Health Intervention for Children with Epilepsy, or MICE) was compared with usual care.

What’s new?

The study was carried out between 2019 and 2022 and included 334 children with epilepsy, aged 3 to 18 years. They were recruited from 13 epilepsy services across England and Northern Ireland; all had a mental health diagnosis. Many (40%) had an intellectual disability; some (24%) had a diagnosis of autism.

Half the children (166) were assessed and treated by epilepsy clinicians using the intervention. They received up to 20 sessions via phone or video conferences over 6 months, with another 2 booster sessions 6 - 12 months later. The control group (168) received an enhanced assessment plus usual care, which varied by site, but was typically provided by NHS psychological services, or via signposting to websites, charities or private practice.

At 6 months, parents’ and carers’ responses to a questionnaire indicated that, compared with the control group, children treated using the intervention:

  • had significantly better mental health
  • had a larger reduction in mental health problems from the start of the study.

The findings were true regardless of age, seizure severity, intellectual disability or presence of autism spectrum disorder at the start of the study. Improvements were maintained up to 1 year. Children receiving the intervention still experienced mental health difficulties, partly because of symptoms of autism, for example, which were not the focus of the study.

In secondary findings, mental health problems at school, home and leisure had less impact on children receiving the intervention than on the control group. After 6 months, their parents also had slightly better mental health than those whose children were in the control group.

Why is this important?

Use of the intervention by a variety of clinicians in epilepsy services was more effective than an enhanced assessment plus usual care. It improved mental health problems in young people with epilepsy, including those with an intellectual disability or autism. The researchers noted that many physical healthcare staff were keen to be trained and to use the intervention.

Remote delivery minimised travel and meant children missed less school. Those living in remote locations could participate, and the trial could continue throughout the pandemic.

What’s next?

Children in both groups completed a mental health questionnaire at the start of the study. This is outside of normal clinical practice and may have improved care (when childrens' answers guided the care they received, for instance). The control group is therefore not entirely comparable with typical usual care. The findings suggest children might benefit from completing a mental health assessment, even without the intervention tested in this study.

The intervention is being used at some epilepsy clinics in England and the research team are helping to train clinicians. In another study, the team explored the value for money of this intervention; results are not yet published.

You may be interested to read

This is a summary of: Bennett S, and others. Clinical effectiveness of the psychological therapy Mental Health Intervention for Children with Epilepsy in addition to usual care compared with assessment-enhanced usual care alone: a multicentre, randomised controlled clinical trial in the UK. The Lancet 2024; 403: 1254 - 66.

A video from Epilepsy Action explaining epilepsy.

Useful information about epilepsy in children can be found on the University College London website.

Short videos from Mental Elf on the impact of the intervention on both parents and children; and on treating mental health in physical healthcare settings.

Interviews about the MICE intervention with children, parents and carers: Nizza IE, and others. Examining change in the mental health of young people with epilepsy following a successful psychological intervention. Clinical Child Psychology & Psychiatry 2024.

You can find information about taking part in research on the Be Part of Research website if your child has epilepsy and you are interested in taking part in research.

Funding: This study was funded by the NIHR Programme Grants for Applied Research.

Conflicts of Interest: No relevant conflicts were declared. Full disclosures are available on the original paper.

Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.

NIHR Evidence is covered by the creative commons, CC-BY licence. Written content and infographics may be freely reproduced provided that suitable acknowledgement is made. Note, this licence excludes comments and images made by third parties, audiovisual content, and linked content on other websites.

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