CATCh-uS ADHD in transition study: Understanding mental health services provided to young people with ADHD in the UK and Ireland as they move from childhood to adulthood
| ISRCTN | ISRCTN12492022 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN12492022 |
| IRAS number | 159209 |
| Secondary identifying numbers | IRAS 159209 |
- Submission date
- 17/09/2019
- Registration date
- 03/02/2020
- Last edited
- 28/03/2023
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Mental and Behavioural Disorders
Plain English Summary
Background and study aims
Attention deficit hyperactivity disorder (ADHD) is a behavioural disorder that includes symptoms such as inattentiveness, hyperactivity and impulsiveness. ADHD was previously seen as a childhood developmental disorder, which meant that adult mental health services have not been 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. It aims to investigate how many young people who have received services for ADHD as a child are in need of services as an adult, what services are available for young adults with ADHD and how people with ADHD, their parents/carers and healthcare professionals experience their transition from child to adult services.
Who can participate?
Paediatricians (doctors specialised in treating children), psychiatrists (mental health doctors) specialising in treating children and young people, young people with ADHD, parents/carers of young people with ADHD and GPs and other healthcare professionals who come into contact with young people with ADHD.
What does the study involve?
There were three parts to the study. In the first part, consultant paediatricians and child and adolescent psychiatrists provided information on the numbers of young people with ADHD who were around the age where they would need to move from child to adult services and where their care moved from and to. The mapping study aimed to create a map of services for young people with ADHD. This involved an online survey to people with ADHD and healthcare professionals, as well as Freedom of Information requests to service providers and commissioners. The third part was to find out people's experiences of moving from child to adults services for ADHD. This involved interviews with people with ADHD, parents/carers and healthcare professionals.
What are the possible benefits and risks of participating?
This study observed and described transition. It did not change the health service provision so it did not affect the services that people would normally have received. Participants gave their time, and there was a possible risk of distress by thinking and talking about difficult experiences or worries about the future. However most participants from all backgrounds had a story that they wished to tell and thought it important to share.
Where is the study run from?
University of Exeter Medical School (UK)
When is the study starting and how long is it expected to run for?
November 2015 to August 2019
Who is funding the study?
The National Institute for Health Research (UK)
Who is the main contact?
Tamsin Ford, catchus@exeter.ac.uk
Contact information
Public
c/o Dr Newlove Delgado
Exeter Medical School
St Luke's Campus
Heavitree Road
Exeter
EX1 2LU
United Kingdom
 ORCID ID |
0000-0001-5295-4904 |
|---|---|
| Phone | 44 1392 726083 |
| catchus@exeter.ac.uk |
Scientific
Douglas House
18B Trumpington Road
Cambridge
CB2 2AH
United Kingdom
| ORCID ID |
0000-0001-5295-4904 |
|---|---|
| tjf52@medschl.cam.ac.uk |
Study information
| Study design | Observational |
|---|---|
| Primary study design | Observational |
| Secondary study design | Surveillance study, cross-sectional study and qualitative analysis |
| Study setting(s) | Other |
| Study type | Other |
| Participant information sheet | Separate information sheets for each study are available via NIHR and catchus@exeter.ac.uk |
| Scientific title | Children with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children’s services to adult services: a mixed methods project using national surveillance, qualitative and mapping studies |
| Study acronym | CATCh-uS |
| Study hypothesis | This research focuses on young people diagnosed with ADHD in transition from children’s services to adult services and aims to identify the current perceived need for transfer of young people with ADHD into adult services, to ascertain these services’ utility and to map the current provision. To address these goals, the study has the following objectives: 1. To identify how many young people with ADHD with an ongoing need for medication need a transfer to adult services and to describe this population across the UK and the Republic of Ireland (ROI) 2. To identify factors influencing service use and to identify factors leading to a transition success/failure 3. To map the services that are currently available for young people with ADHD in transition from childhood to adulthood and summarise what they provide |
| Ethics approval(s) | 1. Approved 20/10/2015, NRES Committee Yorkshire & The Humber – South Yorkshire (Unit 001, Jarrow Business Centre, Rolling Mill Road, Jarrow, Tyne and Wear, NE32 3DT; +44 (0)207 104 8091; nrescommittee.yorkandhumber-southyorks@nhs.net), ref: 15/YH/0426 2. Approved 03/11/2015, HRA CAG (Skipton House, 80 London Road, London, SE1 6LH; +44 (0)207 972 2545; HRA.CAG@nhs.net), ref: 15/CAG/0184 3. Approved, University of Exeter College of Medicine and Health ethics committee (c/o Chair Ruth Garside, European Centre for Environment and Human Health, University of Exeter Medical School, Knowledge Spa, Royal Cornwall Hospital, Truro, Cornwall, TR1 3HD), ref: 15/07/070 |
| Condition | Attention deficit hyperactivity disorder |
| Intervention | Level of need: Surveillance Study and electronic case note survey To assess ongoing service needs, we collected surveillance data via the Child and Adolescent Psychiatry Surveillance System (CAPSS) and the British Paediatric Surveillance Unit (BPSU). Over a period of 12 months, consultant paediatricians and child psychiatrists reported ADHD patients who were prescribed ADHD medication, were within 6 months of the upper age boundary of their service and who would require ongoing services for their medication management. Young people with ADHD and comorbid diagnoses, including learning/developmental disabilities, were reported only if it was their ADHD that required ongoing drug treatment. Young people were excluded from the study if they had a diagnosis of ADHD but did not require medication or were unwilling to take it, they required transition to an adult service only for a psychiatric comorbid condition, or they had already been notified to the study. Those who reported a case were sent a baseline notification survey to collect details of patient treatment and planned transition. After 9 months, a follow-up questionnaire was sent to the reporting clinician to confirm the outcome and details of the transition. To triangulate the data, we also undertook a Clinical Notes Review at one Health Trust which enabled us to compare the total number of cases reported as eligible for transition and the details of transition. Mapping Study The mapping study was designed to identify and locate adult health services for patients with ADHD. By making the map available publicly it was also designed to optimise service provision. An online survey distributed via organisational email lists and social media collected data from patients and health professionals. Freedom of information (FOI) requests (based on the same questions as the online survey) were also sent to commissioners and service providers. Responses were displayed and analysed by informant group and location using mapping software. Services were categorised into four groups: dedicated ADHD NHS services, generic NHS services where respondents had experienced care for ADHD, NHS Child Services or Non-NHS services where respondents had received care for ADHD, and ADHD services identified but no respondent reported experience of ADHD care from them. Utility of services Semi-structured interviews were conducted with seven stakeholder groups to gather a better understanding of the transition process for ADHD patients. These groups were patients pre-transition, patients post-transition, patients who did not transition but returned to adult services, parents of children with ADHD (some of whom were pre-transition, some post transition and some who did not transition), paediatricians and child psychiatrists, health professionals working in adult mental health services, and GPs. The first four groups were recruited via clinical research nurses, the other groups were recruited from the surveillance and mapping studies, with some GPs also recruited via Twitter or through a snowball method. Data from each stakeholder group were analysed separately using a Framework Analysis approach and then compared to look for consensus and differences in views and experiences of transition. |
| Intervention type | Other |
| Primary outcome measure | Surveillance study: 1. Need for transition quantified as the rate per 100,000 17- to 19-year-olds |
| Secondary outcome measures | Surveillance study: 1. Successful transition quantified as the rate of attendance at at least one appointment by 9-month follow up per 100,1000 17- to 19-year-olds 2. Quality of transition assessed using a questionnaire baseline and 9 months later Mapping: 3. Reports of services for adults with ADHD (known about and experience of) assessed via bespoke online questionnaire at a single timepoint per participant Qualitative survey: 4. Optimal transition assessed using semi-structured interviews at a single timepoint per participant using a topic guide to ensure all salient areas were covered |
| Overall study start date | 01/11/2015 |
| Overall study end date | 31/08/2019 |
Eligibility
| Participant type(s) | Mixed |
|---|---|
| Age group | Mixed |
| Lower age limit | 18 Years |
| Sex | Both |
| Target number of participants | No targets as not appropriate to the methods |
| Participant inclusion criteria | For the surveillance study: 1. Consultant child and adolescent psychiatrists and paediatricians registered with the BPSU and CAPSS For the mapping study: 2. Practitioners (child and adult services) working with young people with ADHD 3. Mental health service commissioners 4. Patients with ADHD 5. Carers of young people with ADHD For the qualitative study: 6. Healthcare professionals working in secondary healthcare for children or adult mental health services, i.e. those working in child mental health, adult mental health, paediatrics or primary care who had experience of working with young people who had ADHD and required ongoing services into adulthood and therefore transition 7. General practitioners (GPs) 7. Parents of children with ADHD 8. Young people with ADHD pre-transition, i.e. aged 14 to 16 years and attending CAMHS 9. Young people with ADHD post-transition, i.e. aged 18 or over and transitioned straight from children’s services without a break in service 10. Young people with ADHD who dropped out of CAMHS and re-engaged with adult mental health services, i.e. aged 18 years or over and had re-entered services with a gap in service contact for at least 1 year |
| Participant exclusion criteria | For the surveillance study: 1. Patients not willing or able to take medication for ADHD For the qualitative study: 2. Potential participants who the managing clinician thought it inappropriate for the research nurse to make contact with because of clinical severity, safeguarding or risk to others |
| Recruitment start date | 01/12/2015 |
| Recruitment end date | 31/05/2019 |
Locations
Countries of recruitment
- England
- Ireland
- United Kingdom
Study participating centres
Heavitree Road
Exeter
EX1 2LU
United Kingdom
Exeter
EX2 5AF
United Kingdom
London
SE5 8AF
United Kingdom
Coventry
CV6 6NY
United Kingdom
Bracknell
RG12 1JX
United Kingdom
Nottingham
NG3 6AA
United Kingdom
Sponsor information
University/education
Research Ethics and Governance Office
University of Exeter
Lafrowda House
St Germans Road
Exeter
EX4 6TL
England
United Kingdom
| Phone | 01392 726621 |
|---|---|
| G.M.Seymour@exeter.ac.uk | |
| Website | https://www.exeter.ac.uk/cgr/researchethics/ |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | 31/12/2020 |
|---|---|
| Individual participant data (IPD) Intention to share | Yes |
| IPD sharing plan summary | Available on request |
| Publication and dissemination plan | Throughout this programme of research, we have disseminated our findings via regional, national and international conferences and social media. One of our most impactful outputs is the map of mental health services for adults with ADHD. There were high levels of interest in the map, with over 30,000 views on our website in 12 months and 44,000 impressions on Twitter in 2018. The map was also used by the Exploring Diagnosis research project to send information leaflets to relevant services. UKAAN have agreed to host and keep the map updated and so, as a legacy of the research, it will be available on their website: https://www.ukaan.org/adult-adhd-service-map As of September 2019, several articles are already published. The NIHR report will be published in 2020 and further papers are in preparation. |
| IPD sharing plan | The datasets generated during and/or analysed during the current study will be available upon request from Tamsin Ford at the following email address: catchus@exeter.ac.uk. The qualitative data contain potentially identifiable data despite redactions, and likewise the surveillance data, given the size of the dataset, may also identify individuals. We are happy to share on a named individual basis. The map is now hosted by UK-AAN who will be keeping it updated: https://www.ukaan.org/adult-adhd-service-map-overview . |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Other publications | comparison of surveillance and case note review methods | 20/08/2019 | 18/09/2019 | Yes | No |
| Results article | mapping study results | 01/12/2019 | 18/09/2019 | Yes | No |
| Results article | surveillance study results | 01/11/2020 | 18/09/2019 | Yes | No |
| Results article | 01/11/2020 | 28/03/2023 | Yes | No | |
| HRA research summary | 28/06/2023 | No | No |
Editorial Notes
28/03/2023: Publication reference added.
19/09/2019: Trial's existence confirmed by the Health Research Authority.
