The transition from children's services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study

Abstract

ADHD was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support ADHD patients who become too old for child services. This is the first in-depth study of the transition of ADHD patients from child to adult health services in the UK. Our objectives were to explore: o how many young people with ADHD are in need of services as an adult o what adult ADHD services are available o how ADHD stakeholders experience transition from child to adult services Design An interactive mixed method design was adopted with three study streams; (1) a twelve-month surveillance study with nine month follow-up to find out how many young people required ongoing medication when too old for child services (929 surveys completed by child clinicians); (2) a mapping study to identify and describe services for young adults with ADHD (2,686 respondents to online surveys for patients and health workers and Freedom of Information requests to service providers and commissioners); and (3) a qualitative study to explore key stakeholder experience of transition from child to adult services (144 interviews with 64 ADHD patients, 28 parents, 52 clinicians working in child or adult secondary health services and 14 general practitioners). Members of the public advised each stage of the study. Results Corrected for non-response and case ascertainment, the annual incidence of young people with an ongoing need for medication for ADHD lies between 270 and 599 per 100,000 people aged 17 – 19 years. Of 315 eligible cases for transition, 64% of referrals were accepted but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with ADHD across the UK; 44 were ‘dedicated’ ADHD services (defined chapter 4). Few services provide the full range of recommended provision, most focused on diagnosis and medication. They were unevenly distributed across the UK, with nearly all ‘dedicated’ services in England. Exploring stakeholders’ experiences revealed how invested they are in continuing ADHD treatment and the architecture of services impacted transition. An association between ADHD, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with ADHD, influenced investment. However, even if invested; how accessible adult services were; how patient needs fitted with the remit of the adult service; and the level of patient information available impacted transition outcomes. The results also highlighted how GPs can end up as care-coordinator during transition by default. Limitations Transition estimates were based on those who want medication, so indicate a minimum level of need. Conclusions Few of those who need ongoing support for their ADHD successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult ADHD service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of NICE recommended treatments. Future Work We a need to evaluate various models of transitional care and adult ADHD provision, as well as develop and evaluate psycho-social interventions for young people and adults with ADHD. Funding The National Institute for Health Research - Health Services and Delivery Research Programme.