Title: Young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children's services to adult services (Catch-uS): a mixed methods project using national surveillance, qualitative and mapping studies
Funder: Department of Health and Social Care

Abstract: Several qualitative and quantitative studies have illustrated that young people struggle to move between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS).(1-3) This has been highlighted in a number of government documents and policy guidance;(4,5) however, it was not until 2011 that the government published a mental health outcomes strategy that states how service transition can be improved.(6) Until recently ADHD was controversial as a diagnosis, and then it was conceptualised as a developmental disorder that affected children; therefore, current service configuration cannot accommodate the young people with ADHD who have started to graduate from children’s services.(3,7,8) Poor transition may result in young people with on-going needs disengaging from services,(9,10) which may in turn lead to poorer long-term outcomes such as: academic failure, low occupational status, low self-esteem, substance abuse (tobacco, alcohol or drugs), car accidents, delinquency, and poorer social relationships.(11) Currently, there are no national data on the level of need for the supervision of medication as per NICE guidelines for adults with ADHD. This study focuses on the transfer and transition of young people with ADHD between children’s services and adult services, with particular reference to those requiring medication related to their ADHD as a concrete indication of ongoing service need. The proposed project consists of three streams: a traditional surveillance study of young people with ADHD on medication who are within six months of the age-boundary for discharge from their service, a qualitative study to explore the views and experiences of service users, their carers and providers regarding the barriers to and facilitators of transitions from children’s to adult services and a mapping study that will describe current services delivery. The surveillance stream will run in parallel through the Child and Adolescent Psychiatry Surveillance System (CAPSS) and the British Paediatric Surveillance Unit (BPSU). They provide an established methodology for the study of rare disorders or events that present to consultant child and adolescent psychiatrists and paediatricians practising in the UK and Republic of Ireland (ROI) respectively. A six-month surveillance study will identify all young people with ADHD on medication that require transfer to adult services and referral services. This stream will generate a sampling frame of paediatricians and child psychiatrists to participate in the qualitative stream, through which we will recruit practitioners working with adults who have ADHD. We will interview young people, parents and professionals to explore their views and experiences of the transition between children’s and adult services. We will target three different groups of young people: 1) young people attending children’s services prior to age of maximal drop out from services (14-16 years old), 2) young people who recently successfully transferred directly to adult services, and 3) young adults who dropped-out and re-entered the system in their early to mid-twenties. Young people and parent carers will be recruited from five centres in England: South London and Maudsley NHS trust, Berkshire Healthcare Foundation Trust, Devon Partnership Trust, Coventry & Warwickshire Partnership Trust and Nottinghamshire Healthcare NHS Trust. We will combine information about the location and type of care of services for young adults with ADHD from the surveillance study and qualitative study with email / postal surveys of service commissioners, service providers and key service user groups for young adults with ADHD. All will be asked whether their area has a service for adults with ADHD, if so, whether it has staff with dedicated time to work with these young people and what does it offer them? These findings will inform policy and practice for both child and adult services. They will include substantive contributions regarding service needs of young people with ADHD for both children’s and adult services about barriers and facilitators to transition as well as a national estimate of the level of need.

Lay abstract: This research plans to explore the current options for young people with ADHD when they are too old to stay with children’s services. We do not know how many young people need or want to carry on attending health services; how they, their families and the professionals working with them experience the transition from children’s to adult services; or about how many areas have services for adults with ADHD. Until the end of the last century, ADHD was a controversial condition. Now generally accepted, it has been seen as a developmental disorder of children, and so mental health services for adults are not set up to manage young people who have ADHD and continue to want support to cope with their lives. Meanwhile an increasing number of young people with ADHD find themselves too old for children’s services. The National Institute for Health and Care Excellence (NICE) provides guidelines about the management for ADHD in adulthood. This often involves taking medicines that General Practitioners feel inexperienced to prescribe without support from specialists, as would happen with children who have ADHD. Existing work suggests that young people with developmental disorders like ADHD are particularly likely not to transfer to adult mental health services but there has yet to be an in-depth study of this issue in the UK. This will be the first national study to examine how many young people are in need of services for ADHD as adults. We will also explore how current service users and service providers experience this transition and what services are available for young adults with ADHD across the country. This project has three main themes: 1) A six months surveillance study of young people with ADHD on medication who are within six months of the age-boundary for discharge from their children’s service with a nine month-follow-up to find out where, if anywhere these young people were transferred. 2) In depth interviews with key stakeholders to explore their views and experiences of the quality of the move from children’s services for young people with ADHD. Stake holders will include: young people with ADHD attending children’s and adult services, their parents and practitioners working in children’s and adult health services. 3) A mapping study that will combine information about the location of services for young adults with ADHD from the surveillance and interviews with email / postal surveys of service commissioners, service providers and key service user groups for young adults with ADHD. All will be asked whether their area has a service for adults with ADHD, if so, does it have staff with dedicated time to work with these young people and what does it offer them? Our aim is to provide recommendations to improve service delivery and provision for young people with ADHD and thus improve their health at a key life stage and beyond.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH