Transforming the mental health treatment of young people with epilepsy

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 – approximately 60% – 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 est