Children and Adolescents with ADHD in Transition between Children’s and Adult Services
What happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) when they are too old to stay within children’s services?
THE RESEARCH.
1. Surveillance study of young people with ADHD
2. Qualitative study to explore the views and experiences of young people with ADHD at different stages of the transition process, their parents, and clinicians working in child and adult mental health services
3. Mapping study that combines information about the location of services from the surveillance and interviews with email/postal surveys of service commissioners, providers and key service user group
KEY FINDINGS.
1. Up to half of young people with ADHD need healthcare support as adults
2. Of those young people, 1 in 5 receive the transition
3. Main focus of treatment is medication
4. For the majority, transition is difficult and they struggle to find support as adults
5. Adult services less responsive to their needs, in comparison to child services
6. Young people drop out of ADHD healthcare services at transition because of lack of availability, support and understanding
7. Survey highlights patchy NHS provision in the UK
Impact
The map created as part of the University of Exeter CATCh-uS project, and funded by the NIHR, shows services for adults with ADHD in the UK – UK Adult ADHD Network
Regional analysis of UK primary care prescribing and adult service referrals for young people with attention-deficit hyperactivity disorder: from little to very little – BJPsych Open
The experiences of healthcare transitions between child and adult services for young people with attention deficit hyperactivity disorder: a review of evidence – The Association for Child and Adolescent Mental Health
Online ADHD service map aims to stop young people slipping through net – The Association for Child and Adolescent Mental Health
Supporting Mental Health from Childhood to Adulthood – Exeter Alumni Magazine
Milestones Magazine for members Spring 2020 – Royal College of Paediatrics and Child Health
UK Study Finds Regional Variation in Prescription, Referral Patterns for ADHD – Psychiatry Advisor
For more information, please visit the CATCh-uS Study site at Exeter University
Common Experiences of Adults with ADHD
WHAT WOULD YOU HAVE LIKED TO KNOW ABOUT ADHD WHEN GROWING UP?
My brain is configured in a way where I’m good at certain things and slower at other things
WHAT THINGS DO YOU THINK ARE IMPORTANT FOR OTHERS WITH ADHD TO KNOW?
ADHD is very individual, a lot of those things that are true for other people aren’t true for you…
… A diagnosis helps me understand how my brain works
WHAT IS IT LIKE TO BE AN ADULT WITH ADHD?
Letting people understand what your ADHD means for you … they can be more considerate and fair to you
WHAT IS YOUR EXPERIENCE WITH STIGMA AROUND MEDICATION?
I only stopped taking my medication because of the stigma attached to it, when actually it was incredibly helpful for me
Publications
Price, A., Janssens, A., Newlove-Delgado, T., Eke, H., Paul, M., Sayal, K., et al. (In submission) Mapping UK mental health services for adults with Attention-Deficit/ Hyperactivity Disorder; survey findings, with an analysis of differences in reporting between stakeholder groups. British Journal of Psychiatry Open.
Price, A., Ford, T., Janssens, A., Williams, A. J., Newlove-Delgado, T. (2020). Regional analysis of UK primary care prescribing and adult service referrals for young people with attention-deficit hyperactivity disorder. BJPsych Open; 6(1)
Price, A. (2019). Health service transitions for young people with attention deficit hyperactivity disorder (ADHD): investigating information provision and United Kingdom adult ADHD service availability. (Doctoral Dissertation). Retrieved from https://ore.exeter.ac.uk/repository/handle/10871/39120
Price, A., Newlove-Delgado, T., Eke, H., Paul, M., Young, S., Ford, T., et al. (2019). In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services. BMC Psychiatry;19(1):404.
Price, A., Janssens, A., Dunn-Morua, S., Eke, H., Asherson, P., Lloyd, T., & Ford, T., (2019). Seven Steps to Mapping Health Service Provision: Lessons Learned from Mapping Services for Adults with Attention-Deficit/Hyperactivity Disorder (ADHD) in the UK. BMC Health Services Research, 19(1), 468. doi:10.1186/s12913-019-4287-7
Price, A., Janssens, A., Woodley, A. L., Allwood, M., & Ford, T. (2019). Review: experiences of healthcare transitions for young people with attention deficit hyperactivity disorder: a systematic review of qualitative research. Child and Adolescent Mental Health, 24(2), 113-122. doi:10.1111/camh.12297
Janssens, A., Eke, H., Price, A., Newlove-Delgado, T., Blake, S., Ani, C., . . . Ford, T. (In submission). 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. Health Services and Delivery Research.
Eke, H., Janssens, A., Newlove-Delgado, T., Paul, M., Price, A., Young, S., & Ford, T. (2020). Clinician perspectives on the use of NICE guidelines for the process of transition in Attention Deficit Hyperactivity Disorder (ADHD). Child: Care, Health and Development, 46(1), 111-120.
Eke, H., Ford, T., Newlove-Delgado, T., Price, A., Young, S., Ani, C., . . . Janssens, A. (2019). Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study. British Journal of Psychiatry, 1-7. doi:10.1192/bjp.2019.131
Eke, H., Janssens, A., Downs, J., Lynn, R. M., Ani, C., & Ford, T. (2019). How to measure the need for transition to adult services among young people with Attention Deficit Hyperactivity Disorder (ADHD): a comparison of surveillance versus case note review methods. BMC Medical Research Methodology, 19(1), 179. doi:10.1186/s12874-019-0820-y
Eke, H., Janssens, A., & Ford, T. (2019). Transition from children’s to adult services: A review of guidelines and protocols for young people with Attention Deficit Hyperactivity Disorder (ADHD) in England. Child and Adolescent Mental Health, 24(2), 123-132. doi:10.1111/camh.12301
Eke, H., Janssens, A., Lynn, R. M., & Ford, T. (2018). I12 Using a surveillance methodology to estimate the incidence of transition for young people with attention deficit hyperactivity disorder (adhd) requiring ongoing support from child to adult services. Archives of Disease in Childhood, 103(Suppl 1), A201. Retrieved from http://adc.bmj.com/content/103/Suppl_1/A201.1.abstract
Newlove-Delgado, T., Blake, S., Ford, T., & Janssens, A. (2019). Young people with attention deficit hyperactivity disorder in transition from child to adult services: a qualitative study of the experiences of general practitioners in the UK. BMC Family Practice, 20(1), 159. doi:10.1186/s12875-019-1046-0
Ayyash, H., Ford, T., Janssens, A., Eke, H., Price, A., Morton, M., & Lynn, R. (2018). G469 Impact of capss and bpsu in identifying the imminent needs of adhd patients in transition from childrens to adults services across the united kingdom. Archives of Disease in Childhood.
In Production
- Benham-Clarke, Simon et al. [in draft] Transitions to the adult world among older teenagers with ADHD: the role of educators.
- Titheridge, Godfrey, Eke, Price, Ford, Janssens [ready to submit] Why young people stop taking their ADHD medication. A thematic analysis of interviews with young people. In submission BJPsych
- Newlove-Delgado – Short report: surveillance analysis [in preparation]
- Janssens et al (Blake, Eke, Price, Ford) – Role of parents in service transition process of a child with ADHD (in preparation)
