Title: Transforming the mental health treatment of young people with epilepsy
Funder: Department of Health and Social Care

Abstract: AIM To transform the treatment of mental health disorders in young people with epilepsy RESEARCH QUESTION What is the clinical and cost effectiveness of adding a modular psychological intervention ( MATCH ) to standard care for young people with epilepsy and a mental health disorder? BACKGROUND AND RATIONALE Epilepsy is the most common paediatric serious long-term condition affecting 0.5-1% of children. Rates of common mental health disorders in young people with epilepsy range from 55% to 77%. In addition, children often have multiple co-existing mental health disorders. Yet the majority of mental health disorders &ndash; approximately 60% &ndash; go undetected and untreated in this population and seriously impact social, occupational and educational functioning into adulthood. Current standard care for mental health disorders in paediatric epilepsy is significantly limited because: (1) Specialist child and adolescent mental health services are not integrated with physical healthcare interventions so are delivered late in the care pathway and are hard to access. (2) Standard evidence-based interventions do not address multiple co-existing mental health disorders and do not meet the specific needs of young people with epilepsy. THE PROPOSED INTERVENTION The Modular Approach to Therapy in Children (MATCH) is a new psychological treatment designed to treat multiple co-existing common mental health disorders in youth. There are separable components (modules) that contain standalone therapeutic techniques (such as a depression module containing problem-solving) corresponding to the methods in the leading evidence-based psychological treatments that have been evaluated in 322 RCTs. Many, but not all, of the techniques are cognitive-behavioural and the treatment is NICE compliant. Uniquely, once a problem area has been selected (e.g., anxiety), an algorithm specifies a default sequence of modules and guides clinical judgement allowing multiple disorders to be addressed simultaneously. The new treatment has been evaluated in an influential study in the US and shown to be superior to disorder-specific interventions and usual care. INTEGRATING WITH EPILEPSY SERVICES MATCH can be delivered within epilepsy services, by a wide range of health workers, over the telephone/Skype which will facilitate early intervention, maximise access, and minimise stigma, disruption and cost. MATCH is an average of 16 sessions of therapy delivered over 4-6 months. RESEARCH PLAN Workpackage 1 (Months 1-12): We will develop a Multicomponent Epilepsy-Specific module for Youth ('MESY'). Development will be theoretically derived using the Common Sense Model of Illness. The module will address perceived and enacted stigma and epilepsy-specific issues that impact parenting e.g. overprotection. The existing MATCH modules will be modified to account for learning problems commonly associated with epilepsy and epilepsy-specific examples provided throughout. Modifications will be developed iteratively with significant input from patients, carers and professionals via repeated focus groups. Workpackage 2 (Months 12-18): We will train a minimum of 12 therapists and their clinical supervisors across sites to deliver MATCH. It will use MATCH's portfolio system to ensure therapist competence and adherence. Therapist and patient perspectives on the intervention will be assessed by standardised interviews analysed qualitatively. Workpackage 3 (Months 18-42): The third workpackage is an RCT designed to test the hypothesis that adding MATCH to standard care within epilepsy services will be clinically and cost-effective. The researchers will recruit 1195 young people aged 3-18 across 10 sites to complete the Strengths and Difficulties Questionnaire (SDQ) within the epilepsy service. Those who score above the clinical threshold using an algorithm developed in our PDG will be invited to complete the Development and Wellbeing Assessment ( DAWBA ) online to establish if they meet DSM5 diagnostic criteria for a common mental health disorder. Those that meet diagnostic threshold will be invited to participate in the RCT until a sample of 334 has been recruited. The RCT will evaluate the clinical and cost-effectiveness of adding MATCH (with the additional epilepsy-specific module) to standard care for mental health disorders. The primary outcome measure is the SDQ, independently assessed six months post-randomisation. All analyses will be conducted on an intention-to treat basis and blind to treatment assignment. Measures will be repeated one year post-randomisation. Workpackage 4 (Months 18-42): The final workpackage is a qualitative outcome and process evaluation with 24 participants who have had the intervention using purposive sampling and across the age ranges that will be examined using a combination of Framework Analysis and Interpretative Phenomenological Analysis (IPA). PROJECTED OUTPUTS AND DISSEMINATION PLANS The main projected output is the development of a clinically and cost-effective modular psychological intervention that can be integrated within epilepsy services and facilitate early intervention. Dissemination plans include publications in research journals, social media via our RAG and Third Sector partners, and presentations at mental health, neurology and liaison psychiatry meetings. BENEFITS TO PATIENTS AND THE NHS Benefits to patients and the NHS include closer integration of mental and physical healthcare with resultant improvement in early access to evidence-based mental health treatments.

Lay abstract: Aim To improve the treatment of mental health problems in young people with epilepsy. Background Epilepsy is a brain disorder with seizures. It is the most common serious long-term illness in young people. At least half of young people with epilepsy also have mental health problems like depression, anxiety and behaviour problems. Many people have more than one of these problems. The mental health problems impact so much on all areas of life including family, friendships and education that the National Institute for Health and Care Excellence recommends that the psychological needs of young people with epilepsy should always be considered. However, existing epilepsy services are separate from mental health services so mental health problems aren t treated as well as they could be. The proposed treatment There is an exciting new psychological treatment for childhood anxiety, depression and behavioural problems. It is modular which means it has separate sections for treating each of the mental health problems but sections can be combined so more than one mental health problem can be helped at the same time. This Modular Approach to Therapy for Children ( MATCH ) can be given within epilepsy services, by staff without special mental health training and over the telephone/Skype which many families prefer and which reduces costs to the NHS so more children can be treated nationwide. The treatment is flexible so can be given to parents and/or the young person according to age and type of problem. Families have told us that the treatment needs to have an extra module to help with the special mental health issues in epilepsy e.g., worries about having seizures. What we will do 1) Develop a new module so the treatment meets the special mental health needs of young people with epilepsy 2) Develop a training package for NHS staff to deliver this treatment within epilepsy services. 3) Assess nearly 1200 young people with epilepsy. Those people with significant mental health problems will be invited to either a) receive the new treatment plus their usual care for mental health problems or b) continue to receive their usual care. Group selection is decided by chance. We will compare the two groups after treatment (six months) to see which group does better in terms of their mental and physical health. We will also see if the new treatment is value for money. 4) Talk to young people and families to understand what treatment was like and how to improve it. Patient and public involvement Our PPI research advisory group and epilepsy charities will ensure the research focuses on issues that matter most to them. We will use traditional and modern (social media) methods to tell people about the findings.

Research activity codes: 5.6 PSYCHOLOGICAL AND BEHAVIOURAL;6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: NEUROLOGICAL;MENTAL HEALTH