BPSU study - Attention Deficit Hyperactivity Disorder (ADHD) in transition between children’s services and adult services (CATCh-uS)

Surveillance of children and adolescents with Attention Deficit Hyperactivity Disorder (ADHD) in transition between children’s services and adult services (CATCh-uS) focused on what happens to young people with ADHD when they are too old to stay with children’s services. Surveillance was also run in parallel through the Child and Adolescent Psychiatry Surveillance System at the Royal College of Psychiatrists.

Papers have now been published in the British Journal of Psychiatry and BMC Medical Research Methodology. Links to the abstracts can be found below. In addition a webinar has now been produced outlining some of the findings from the study which can be view below.

Lead investigator

Professor Tamsin Ford
University of Exeter Medical School
South Cloisters
St Luke’s Campus
Exeter EX1 2LU
Email: t.j.ford@exeter.ac.uk
Website: CATCh-us webpage

About the study

Overview

We know little about how many areas have specialist services for adults with ADHD and how many young people need to move to them when they are too old for children’s services. Until the late twentieth century, ADHD was a controversial diagnosis. Once generally accepted, it is seen as a developmental disorder of children, and so mental health services for adults are not set up to manage young adults who have ADHD and continue to want support to cope with their lives.

There are National Institute for Health and Care Excellence (NICE) guidelines about the management for ADHD in adulthood, and this often involves taking medication that General Practitioners feel inexperienced to prescribe without support from specialists, as happens with children. Existing work suggests that young people with developmental disorders like ADHD are particularly likely not to transfer to adult mental health services. 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.

This project consists of three streams:

  1. a 13-month surveillance study of young people with ADHD
  2. a qualitative study to explore the views and experiences of service users
  3. a mapping study that will combine information about the location of services from the surveillance and interviews with email/postal surveys of service commissioners, providers and key service user groups.

You can download the protocol card, including references, below.

Case definition

New or existing cases seen in the reporting month fitting the following criteria:

  • a young person diagnosed with ADHD taking and wishing to continue taking medication for their ADHD, and
  • who you have reviewed within six months of your services age-boundary (for many this will be 17.5-18 years of age, though some keep young people later and some discharge earlier)

Any young person with ADHD and comorbid diagnoses, including learning or developmental disabilities, should be reported only if it is their ADHD for which on-going drug treatment in adult services is required.

Exclusion criteria:

  • young people with a past or current history of ADHD but who do not require medication for their ADHD
  • young people with past or current ADHD who are not currently taking medication for their ADHD
  • young people with past or current ADHD who require transition to adult mental health services in relation to comorbid difficulties but do not require or take current drug treatment for their ADHD
  • young people who transition from paediatric services to Child and Adolescent Mental Health Services (CAMHS) under the age of 18.

Webinar and publications

Professor Tamsin Ford, Dr Tamsin Newlove-Delgado and Sr Astrid Janssens led a webinar, CATCh uS before we fall - Transitional care for young adults with ADHD in January 2020, which you can watch:

Published papers

Duration

November 2015 to November 2016 (13 months of surveillance). Follow-up until August 2017 (nine month follow-up).

Funding

National Institute for Health Research.

Approval

This study has been approved by NRES Committee – Yorkshire and Humber – South Yorkshire Research Ethics Committee (REC reference: 15/YH/0426) and has been granted Section 251 HRA-CAG permission (CAG Reference: 15/CAG/0184).

Support group

Partners

Logos of organisations in this study