Young people with ADHD or autism are falling through the gap between children’s and adult health services, often dropping out of care entirely. This five-year programme will develop better ways to identify, treat, and support these individuals during the critical transition from age 16 to 25, including those with learning disabilities who are frequently excluded from adult services. The problem is urgent: the lifetime cost for a person with autism exceeds £2.4 million, and co-occurring mental health problems such as drug abuse, anxiety, and depression are common. Yet few adult services are equipped to manage these patients, leading to misdiagnosis, inappropriate treatment, and worsening outcomes. The researchers will first investigate why people drop out and what the consequences are, then test simple educational programmes to improve service uptake. In the second phase, they will test whether treatments proven in the general population—such as cognitive behavioural therapy for obsessive-compulsive disorder and medication for ADHD—work for these groups and are cost-effective. If successful, the programme could reshape how the NHS handles neurodevelopmental disorders across the lifespan, reducing long-term costs and improving quality of life for a large, underserved population.
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We will develop better services and treatments for people with attention deficit hyperactivity disorder (ADHD), and autistic spectrum disorder (ASD), who are ‘in transition’ from childhood to adulthood. People with ADHD have serious deficits in attention and are hyperactive. In contrast those with ASD (autism, ‘atypical’ autism, and Asperger syndrome) have stereotyped and obsessional behaviours, and severe abnormalities in socio-emotional behaviour and communication. They are different disorders, but have a lot in common. Thus we will study them together.Both ADHD and ASD are neurodevelopmental disorders that have life long effects. They are of great public concern, much more common than previously thought, very frequently co-occur in the same person, and are associated with serious co-morbid mental health problems (e.g. drug abuse, anxiety, depression, learning disability (LD), and obsessive-compulsive disorder (OCD)). This has a large social impact; e.g. the individual lifetime cost for ASD exceeds £2.4 million [1], and is significantly increased by co-morbid LD.People with ADHD and ASD have particular problems during the transition from children’s to adult services. Many ‘drop-out’ and go untreated. Also few adult services are skilled in managing them, those already in these services are often misdiagnosed and inappropriately treated, and LD people are frequently excluded. This probably impacts on clinical outcome and costs – as treatment of the core disorders during childhood greatly reduces co-morbidity. However it is unknown: 1) if this is true in young adults, or those with LD; and 2) if beneficial treatments developed in the general psychiatric population for the co-morbid problems frequently found in ASD and ADHD are transferable to, and cost effective, in these groups (e.g. cognitive behaviour therapy (CBT)) for OCD).Government policy calls for evidence-based practice, needs-led services [2], and NICE guidelines stress psychological treatments. We have published instruments which measure health needs, costs and consumption, and gold-standard research diagnostic tools. Also we carried out very successful pilot studies in the treatment of co-morbid disorders using both pharmacological approaches and CBT. Our plan, therefore, is to extend our work in two phases with the themes; 1) more effective services and 2) better treatments. We will include people with ADHD and/or ASD between the ages of 16 and 25 years during the ‘transition’ from child to adult services, and those with LD.In phase 1 (years 1-3) we will improve case identification and management. In phase 2 (years 3-5) we will test effective treatments developed in the general population and reduce co-morbidity. However we will measure the cost-effectiveness of interventions during both phases.We cannot include all subgroups of affected people in each part of the program, but we will improve treatment across a wide spectrum of individuals, as different parts of the program are focussed to bring rapid benefit in different groups. More effective services: We will firstly; 1) develop simple protocols for case identification, 2) ascertain why people ‘drop out’ of services during the ‘transition’ and the consequences of that; and 3) determine what cost-effective interventions help adult services better identify, and meet the needs, of these people. Based on this we will test the cost-effectiveness of a simple educational program for improving outcome. This part of the program will rapidly help develop better services that meet the needs of users and carers. Also it will identify people for the second phase of the program.In this second part we will reduce disease burden by better use of current pharmacological and psychological treatments, and help people who are often excluded. The drug studies will initially focus on ADHD, as effective medications exist that can be rapidly tested. We will determine if; 1) co-morbid disorders (e.g. drug abuse, and a
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