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

Abstract

Background Attention deficit hyperactivity disorder was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support attention deficit hyperactivity disorder patients who became too old for child services. To our knowledge, this is the first in-depth study of the transition of attention deficit hyperactivity disorder patients from child to adult health services in the UK. Objectives Our objectives were to explore how many young people with attention deficit hyperactivity disorder are in need of services as an adult, what adult attention deficit hyperactivity disorder services are available and how attention deficit hyperactivity disorder stakeholders experience transition from child to adult services. Design An interactive mixed-method design was adopted with three study streams: (1) a 12-month surveillance study with 9-month follow-up to find out how many young people required ongoing medication when they were too old for child services (929 surveys completed by children’s clinicians); (2) a mapping study to identify and describe services for young adults with attention deficit hyperactivity disorder (2686 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 stakeholders’ experiences of transition from child to adult services (144 interviews with 64 attention deficit hyperactivity disorder patients, 28 parents and 52 health clinicians; 38 working in child or adult secondary health services and 14 general practitioners). Members of the public advised at each stage of the study. Results When corrected for non-response and case ascertainment, the annual number of young people with an ongoing need for medication for attention deficit hyperactivity disorder lies between 270 and 599 per 100,000 people aged 17–19 years. Among 315 individuals eligible for transition, 64% were accepted, but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with attention deficit hyperactivity disorder across the UK, of which 44 are ‘dedicated’ attention deficit hyperactivity disorder services. Few services provide the full range of recommended provision; most focus on diagnosis and medication. Services are unevenly distributed across the UK, with nearly all ‘dedicated’ services being in England. Exploring stakeholders’ experiences revealed how invested the stakeholders are in continuing attention deficit hyperactivity disorder treatment and how the architecture of services affects transition. An association between attention deficit hyperactivity disorder, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with attention deficit hyperactivity disorder, influenced investment. However, even with investment, how accessible adult services are, how patient needs fit with the remit of the adult service and the level of patient information available affect transition outcomes. The results also highlight how general practitioners can end up as care co-ordinators during transition by default. Limitations Transition estimates were based on those who want medication, so these indicate a minimum level of need. Conclusions Few of those who need ongoing support for attention deficit hyperactivity disorder successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult attention deficit hyperactivity disorder service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of National Institute for Health and Care Excellence-recommended treatments. Future work We need to evaluate various models of transitional care and adult attention deficit hyperactivity disorder provision, as well as develop and evaluate psychosocial interventions for young people and adults with attention deficit hyperactivity disorder. Trial registration Current Controlled Trials ISRCTN12492022. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 42. See the NIHR Journals Library website for further project information.

Mapping UK mental health services for adults with attention-deficit/hyperactivity disorder: national survey with comparison of reporting between three stakeholder groups

“…1. A more detailed breakdown of the sample by data source and stakeholder identity is available in the CATCh-uS study report 20 Fig.…”

“…There is also scope for further mapping to explore the uptake and availability of shared care for ADHD, as qualitative research suggests that some young adults are treated exclusively by their GPs, while others experience difficulties finding a GP willing to prescribe medication even under shared care arrangements. 20 This suggests that the implementation of shared care arrangements may be highly variable.…”

Parenting roles for young people with attention‐deficit/hyperactivity disorder transitioning to adult services

“…Recruitment was continuously monitored to ensure that the sampling frame was being evenly populated. Potential young people and parent participants were identified by clinical research nurses at 10 NHS provider organizations (Trusts) 7 …”

“…This and low numbers of patients with ADHD who successfully transition to adult services in the UK 6 has focused attention on what can help support continuity of care. Existing studies have suggested parents are a key component for successful transition from child to adult services, with mothers typically taking responsibility for the transition process 7,8 . Based on earlier findings from our qualitative study exploring ADHD service transition in the UK, 7 in this study we present a typology of the roles and work parents of young people with ADHD adopt in the illness trajectory and how these change during transition to adulthood.…”

Awareness of ADHD in primary care

“…A scoping review (Swift, Sayal, & Hollis, 2014) established many issues with transitional care, including a lack of appropriate adult care services. This review and more recent studies on transitional services (Janssens et al, 2020;Newlove-Delgado et al, 2018) also establishes that policy and guidelines recommendations are not often implemented into practice. NICE guidelines recommend that continued review of treatment should be shared between services (specialists' services and primary care).…”