Transforming Treatment for Young People with Tic Disorders: Scalable, Evidence-Based Digital Therapy

BACKGROUND & RATIONALE: Tic disorders, including Tourette Syndrome (TS), affect 20% of young people, causing substantial impairment and societal costs. UK treatment pathways are non-existent in many places, with long waiting lists. A recent survey of >1,500 people with tics showed 23% wait >3 years for diagnostic assessment. 80% are not able to access treatment. Of the 17 UK tic specialists, 12 are in London. Our team developed 'Online Remote Behavioural Intervention for Tics' (ORBIT) and an online psychoeducation platform, both evaluated through a randomised control trial. ORBIT and psychoeducation were acceptable to families, improved tics, were cost effective and saved staff time. ORBIT was most effective and 55% of participants were classified as treatment responders, reducing the need for further face-to-face treatment. Patients do not need to be diagnosed with Tourette syndrome to benefit from ORBIT. We have since re-developed the therapeutic content of ORBIT on NHS-compliant platforms, and ORBIT has received conditional approval via a NICE Early Value Assessment (EVA). NICE endorse ORBIT’s potential to reduce waiting lists and widen access to care. The NICE evidence generation plan arising from the EVA calls for real-world evidence for ORBIT and a streamlined psychoeducation component to be offered pre-ORBIT before they will give full approval. Psychoeducation isn’t readily available in the NHS. Accordingly, we need to refine/condense our current psychoeducation to develop a new psychoeducation component named TIPS (Tic Information and Psychoeducation Support). A combination of TIPS and ORBIT will create a complete ORBIT service. OBJECTIVES: We aim to reduce waiting lists and widen access to evidence-based care for young people with tics by creating “TIPS” as a pre-ORBIT offer and collect real-world evidence for TIPS and ORBIT to meet the NICE EVA. Key objectives are: 1.Engaging people and communities (P&C) to co-deliver the project 2.Refining the existing psychoeducation content to create TIPS on an NHS compliant platform 3.Exploring models of delivery for implementing in the care pathway 4.Ensuring regulatory compliance and maintaining IP 5.Implementing TIPS/ORBIT in services 6.Conducting a real-world evaluation of TIPS and ORBIT, quantifying impact on waiting lists 7.Developing a budget impact analysis and commercialisation plan 8.Disseminating findings METHODS: We plan 8 work packages delivered by world-leading clinicians and academic experts, in adoption, implementation, commercialisation, and real-world evidence generation. We include extensive stakeholder engagement and dissemination activities. P&C: We have significant P&C support, including an established P&C group, with ethnic minorities and lower socio-economic groups representation. This group have supported the application and will support the platform design, pathway design, real world evaluation and dissemination. EXPECTED OUTCOMES: The project will achieve full NICE approval for ORBIT and expand access to evidence-based support for young people with tics. Implementing TIPS and ORBIT is expected to reduce waiting times, improve access to care, and enhance clinical outcomes for young people. IMPACT: We have substantial interest from patients, clinicians and commissioners in this service that will provide a transformative advancement in tic provision, offering scalable, cost-effective, and accessible digital therapies that align with the NHS's strategic goals.