Kristina Aspvall

While obsessions (intrusive, unwelcome thoughts) and compulsions (repetitive, cumbersome behaviors) are experienced by many children and young people, we currently cannot predict when these features might become highly impairing for an individual, sometimes leading to a diagnosis of Obsessive-Compulsive Disorder (OCD). To meet this gap, we aim to develop a tool to pinpoint who is likely to develop OCD and when. We will combine easily obtainable information, often found in medical records, with more complex information on genetic make- up and brain features, to find out which type of information helps most in prediction. Along with those living with OCD and clinical teams, we will explore how, when and where such tools are best used. We also aim to develop an online intervention for parents of children likely to develop OCD that is accessible, usable and effective. We are working in three nations, Brazil, the UK and Sweden, so this intervention can incorporate the experiences of those with OCD across several cultures, ensuring the intervention can be used widely. At each step of this research, those with lived experience of OCD will shape our goals, help with the research, and make sure findings are meaningful and shared widely.

Obsessive-compulsive disorder (OCD) is a common psychiatric disorder that is associated with high functional impairment, increased mortality risk and a high economic burden for society. Since the typical onset is during childhood, and time from symptom onset to receiving treatment is generally long, new innovative and flexible ways to intervene at an early stage is needed. We have previously shown that internet-delivered cognitive behaviour therapy (ICBT) is as effective as in-person treatment when delivered in a stepped-care format for children and adolescents with OCD but using less therapist resources. The proposed project would build upon our previous experience and expand the outreach of psychological interventions for young people who struggle with obsessions and compulsions. We will first investigate the long-term effects of the stepped-care approach two years after treatment completion, and also analyse if it possible to predict high-risk individuals in an early phase of the treatment. The results from this part of the project will inform more effective treatment selection and stratification. Secondly, we will expand our ICBT approach and test it for youths with OCD who also are diagnosed with autism spectrum disorder (ASD). Clinically, children with ASD are a particularly important population to reach and offer evidence-based psychological interventions. Thirdly, we will investigate if it is feasible to deliver an online prevention programme to parents who have children at risk of developing OCD.

Research problem / specific questions Autism Spectrum Disorders (ASD) are neurodevelopmental disorders associated with life-long struggles and high societal costs affecting about 2% of all children and adults. A large majority of young people with autism have comorbid mental disorders, such as obsessive-compulsive disorder (OCD), which are potentially treatable. However, these treatments are rarely available because they require access to highly specialised clinics. The families of children with ASD demand more access to treatment for these comorbidities. Access to specialist treatment could be improved dramatically if routine aspects of treatment could be digitalised. The overarching purpose of this project is to co-develop and evaluate the efficacy and cost-effectiveness of a novel digital intervention for OCD in young people with autism, and to follow through with a nationwide implementation of the intervention.  Data and method We propose to partner with patients, families, and clinicians to develop a novel digital intervention and evaluate its efficacy and cost-effectiveness in a fully powered multicentric (Stockholm, Lund, Gothenburg) randomised controlled trial (N=220), comparing our novel digital intervention with an active comparator. Next, we will implement the intervention in the national Stöd och Behandling digital platform and will conduct a real-world evaluation of the intervention in the same three clinics.  Plan for project realisation The project brings together a multidisciplinary team of researchers with a track record in child and adolescent psychiatry, clinical trials, digital interventions, biostatistics, health economics, and implementation science. The team also includes service users and patient organisations that will contribute with their lived experience, as well as health professionals.  RelevanceThis project originated as a direct response to a demand from families who have children with ASD. This will be the first properly powered trial of a digital intervention for a comorbid psychiatric disorder in autistic children anywhere, and the first to conduct a health economic evaluation. This will also be a rare example of national implementation of a digital intervention for youth with mental health problems and of a formal evaluation of the implementation. If successful, this project could represent a new model for the development and implementation of digital interventions for a broader range of comorbidities in youth with ASD.