CAPSS studies

CAPSS usually has one or two studies running at any one time, looking at the incidence of rare disorders in children or adolescents.

If you would like to discuss running a study on CAPSS, please contact us at CAPSS@rcpsych.ac.uk.

Current studies

Please note that surveillance has closed for the below studies.

Coverage and commencement date

CAPSS surveillance will be undertaken for 13-months, commencing in March, 2021, for the UK and Ireland. There will be a one-year follow-up questionnaire for each case reported.

Background

The study aims to collect data on Avoidant/Restrictive Food Intake Disorder (ARFID), a mental and behavioural disorder diagnosis introduced in 2013. ARFID is an umbrella term used to describe restrictive eating patterns which result in significant health problems, including weight loss, poor growth, nutritional deficits or poor emotional wellbeing. Unlike in anorexia nervosa, restrictive eating in ARFID is not associated with concerns about body image, weight or shape.

Aims

By using questionnaires sent to paediatricians through the British Paediatric Surveillance Unit (BPSU) and child and adolescent psychiatrists through the Child and Adolescent Psychiatric Surveillance system (CAPSS), this study aims to establish incidence rates of ARFID presenting to secondary health care, referral pathways, patterns of presentation, and clinical features in the United Kingdom and Ireland.

Study justification

To date very little is known about this disorder and its associated behaviours and outcomes in British and Irish children and adolescents and, as a recent diagnosis, it is of great international interest.

Funding

The Former EMS Ltd (charity number 1098725, registered Oct. 9th 2017) have funded the study up to £45,502. There are no conflicts of interest.

Ethical approval

The study has been approved by West Midlands - Black Country Research Ethics Committee - 20/WM/0256; HRA Confidentiality Advisory Group - 20/CAG/0120; Public Benefit and Privacy Panel for Health and Social Care (HSC-PBPP) - 2021-0113; Northern Ireland Privacy Advisory Committee requirements were met.

Principal investigator

Dr Dasha Nicholls, The Centre for Psychiatry, Imperial College London, 7th Floor Commonwealth Building, Du Cane Road, London W12 0NN.

Email: d.nicholls@imperial.ac.uk. Telephone: 0208 383 4161

Further information on the study, including the case definition and reporting instructions, are available from:

Coverage and commencement date

A CAPSS surveillance study for 13 months in England, to start February 2021.

Background

National policy specifies that young people requiring psychiatric admission should be cared for in units appropriate to their age-group. Unfortunately, demand often exceeds bed availability and young people may be admitted to units located far away from their home or to adult wards.

This means separation from family and friends, or receiving care that is not specifically tailored for their age. At an already difficult time, such admissions may worsen the distress that young people and their families experience. Negative experiences may lead to rejection of help from services after discharge. 

Study aims

This research aims to understand and improve the experience of care for young people who require inpatient mental health care and, specifically, to:

  • find out the numbers of 13-17 year-olds admitted to general adolescent units at distance from home or to adult psychiatric beds
  • describe the characteristics and outcomes of the young people affected.

Study justification

At present, we know little about how many young people are admitted far away from home or to adult wards or the factors that contribute to such admissions. Our findings will generate new knowledge and be used to make recommendations to improve access, acceptability and quality of care. 

Funding

National Institute for Health Research (NIHR) Applied Research Collaboration East Midlands (ARC-EM).

Ethical approval

This study has been approved by South Birmingham Research Ethics Committee (20/WM/0265) and Section 251 HRA-CAG permission (20/CAG/0127).

Principal investigator

Professor Kapil Sayal, Institute of Mental Health, University of Nottingham Innovation Park, Nottingham, NG7 2TU.

Further information on the study, including the case definition and reporting instructions, are available from:

Completed studies

About the study

The CostED study was a UK- and Republic of Ireland- wide study which started in February 2015. It is the largest CAPSS study to date.

The study identified incident cases of anorexia nervosa in young people aged between 8 and 17 years and 11 months and classify the models of care provided.

Follow-up data will be used to evaluate whether increased investment in community-based specialist eating disorder services would benefit young people and provide good value for money to the NHS.

Funding

National Institute for Health Research (11/1023/17) and Health and Social Care Research and Development Division, Public Health Agency (Northern Ireland)

Approved by: King’s College London REC [PNM/13/14-105] and the Health Research Authority Confidentiality Advisory Group [CAG 4-03(PR1)/2014] under Section 251. 

Lead investigator

Sarah Byford, Professor of Health Economics, Centre for the Economics of Mental and Physical Health, King’s College London, De Crespigny Park, London SE5 8AF; s.byford@kcl.ac.uk

Resources: Further information on the study, including the case definition and reporting instructions, are available from:

CostED protocol card (pdf)

 

About the study

Surveillance of Children and adolescents with ADHD in transition between children’s services and adult services (CATCh-uS) started in November 2015.

This project focused on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) when they are too old to stay with children’s services. 

Little is known 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. 

Lead investigator Professor Tamsin Ford, University of Exeter Medical School, South Cloisters, St Luke’s Campus, Exeter EX1 2LU; t.j.ford@exeter.ac.uk

Overview

This project focused on what happens to young people with Attention Deficit Hyperactivity Disorder (ADHD) when they are too old to stay with children’s services. 

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 20th 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 was the first national study to examine how many young people are in need of services for ADHD as adults. We also explored how current service users and service providers experience this transition.

This project consisted of 3 streams:

  1. a 6 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.

Case definition

Please report any young person with ADHD taking medication for ADHD seen by you for the first time in the 6 months preceding the young person reaching your service’s age boundary. Please report any case even if you believe the case may have been reported from elsewhere.

This included any:

  • Young person with a clinical diagnosis of ADHD under the care of CAMHS, who is reviewed for the first time when within six 6 months of reaching the services’ age boundary, whatever this may be. Young people should only be reported once and those that have already been seen and reported in this time-scale should not be reported a second time.
  • Young person who is considered to require continued drug treatment for their symptoms of ADHD after crossing the service age boundary.
  • young person who has not previously been reported to the BPSU in relation to the current study.
  • Young person with ADHD and comorbid diagnoses, including learning / developmental disabilities, should be reported only if it is their ADHD for which on-going drug treatment in adult services is required. 

What was excluded?

  • Young people with a past / current history of ADHD but who do not require medication for their ADHD.
  • Young people with past / current ADHD who are not taking medication for their ADHD
  • Young people with past / current ADHD who require transition to adult mental health services in relation to comorbid difficulties but not require or take current drug treatment for their ADHD.
  • Young people who have been reported previously to the BPSU in relation to the current study. 
  • Young people who transition from paediatric services to CAMHS under the age of 18.
  • When did the study run?
  • November 2015 to April 2016 (6 months of surveillance with a possible extension to 13 months depending on case numbers), Follow-up until January 2017 (9 month follow-up).

Funding

National Institute for Health Research

Ethical approval

This study was approved by NRES Committee – Yorkshire & 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).

Visit the project website

Support groups

UK ADHD Network (UKAAN) and Adult Attention Adult Attention Deficit Disorder UK (AADD-UK)  Disorder UK (AADD-UK)

Further information on the study, including the case definition and reporting instructions, are available from:

Reports 

About the study

This UK- and Republic of Ireland-wide study started in November 2011. 

It was the first formal epidemiological study of GID in children and adolescents and will involve consultant Paediatricians as well as Child and Adolescent Psychiatrists

The study aimed to estimate the incidence of GID; describe clinical presentation, co-morbidities and natural history; and examine current management and short-term treatment outcomes

The study is intended to inform service provision and clinical management of this important condition.

Funding

Tavistock & Portman grant via the Advisory Group for National Specialised Services

REC Approval

  • London Bloomsbury REC (ref.11/LO/1512) and the National Information Governance Board under Section 251 (ECC 8-02(FT4)/2011).
  • the Charing Cross Hospital MREC (Ref: 08/H0711/30), PIAG Section 60 Support (Ref: PIAG/BPSU 3-06(FT1)/2008)

Lead Investigator: Dr Sophie Khadr Academic Clinical Lecturer General and Adolescent Paediatrics, UCL Institute of Child Health, 30 Guilford St, London WC1N 1EH.

Resources

Further information on the study, including the case definition and reporting instructions, are available from:

About the study

This study started in October 2008. 

It aimed to estimate incidence, describe features and presentation, co-morbidities and family psychiatric history. Current management and short term outcome will also be investigated

This study was the first to involve all child and adolescent psychiatrists as well as paediatricians.

Funding

BUPA Foundation

REC Approval

The Charing Cross Hospital MREC (Ref: 08/H0711/30), PIAG Section 60 Support (Ref: PIAG/BPSU 3-06(FT1)/2008)

Publication

The following paper was published in the British Journal of Psychiatry in 2013

Ani C, Reading R, Lynn R, Forlee S, Garralda E. Incidence and 12-month outcome of non-transient childhood conversion disorder in the U.K. and Ireland. Br J Psychiatry. 2013;202:413-8. doi: 10.1192/bjp.bp.112.116707

Lead Investigator: Dr Cornelius Ani

Further information on the study, including the case definition and reporting instructions, are available from:

About the study

This study, which started in September 2009, aimed to estimate incidence, describe features and presentation, co-morbidities and family psychiatric history. Management and short term outcome was also investigated.

Funding

Research and Clinical Effectiveness Dept, Northumberland, Tyne & Wear NHS Trust

REC/ECC Approval: Charing Cross REC (09\H0711\28)

Lead Investigator: Dr Adi Sharma, Academic Specialist Registrar and Hon Clinical Lecturer Northumberland, Tyne & Wear NHS Trust, Newcastle University, 3rd Floor, Sir James Spence Institute, Royal Victoria Infirmary, Newcastle, NE1 4LP

Email: SPBD-UK.ROI@ncl.ac.uk

Resources

The case definition and questionnaires used were as follows:

The Bipolar presented interim results from 6 months of surveillance at the 2010 Paediatric Bipolar Conference in Boston, USA in March.

Results from 12 months surveillance were presented at the RCPsych Annual Child & Adolescent Faculty Meeting. Download the poster (pdf).

About the study

This study started in September 2010 and ran on the yellow cards until October 2011

The study aimed to estimate incidence, describe features and presentation, co-morbidities and family psychiatric history

Management and short term outcome was also investigated

Funding 

Wolfson Research Institute and Tees, Esk and Wear Valleys NHS Foundation Trust

REC/ECC Approval

TBC

Lead Investigator: Dr Paul Tiffin, Honorary Senior Clinical Lecturer & Consultant in the Psychiatry of Adolescence, Durham University

The case definition and questionnaires are as follows:

Study Period

March 2005 - May 2007

Investigator: Dr D Nicholls, R Lynn, Dr R Viner

Published Papers

20th BPSU Annual report

Advice/Support Group: Beating Eating Disorders (BEAT), 103 Prince of Wales Road, Norwich NR1 1DW. Tel: 0845 1414. B-eat youth line Tel: 0845 634 7650 0

The Childhood Disintegrative Disorder – Surveillance Study (CDD-SS) will take place across the UK and Ireland; surveillance took place from Dec 2016 to Dec 2017, followed by a 12- and 24-month follow-up period

Background

CDD is a rare condition in which a previously typically-developing child very rapidly loses intellectual and developmental skills resulting in impairments similar to a severe form of Autism. 

There have been no incidence studies of CDD in the published literature, and studies have provided wide-ranging estimates of prevalence.  The cause of CDD has not yet been identified. 

Aims

  • To establish incidence, demographic and clinical presentation features of CDD;
  • to provide information on current investigative and management approaches; 
  • to have a better understanding of short-term outcomes, enabling more accurate prognostic information to be shared with families, and to allow more tailored service provision for affected children; 
  • to raise awareness of CDD amongst clinicians; 
  • to enable planning of future studies of aetiology and interventions

Why we’re doing the study

To begin to unravel such a rare and devastating condition, we need 

  • knowledge of the true incidence and spectrum of children presenting with CDD
  • how they are investigated and managed, and crucially 
  • their outcome.

Funding

Funding for this study has been granted by The Shirley Foundation

Ethical approval

Ethical approval for this study has been granted by the London – Bloomsbury Research Ethics Committee, Ref: 16/LO/0799; and the Health Research Authority Confidentiality Advisory Group, Ref 16/CAG/0061

Lead Investigators

Dr Michael Absoud; Consultant in Paediatric Neurodisability, Paediatric Neurosciences, 4th Floor, Staircase D, St Thomas’ Hospital, Westminster Bridge Road, London, SE1 7EH, michael.absoud@gstt.nhs.uk. 

Dr Jessica Turnbull; Consultant Paediatrician Community Child Health, Sunshine House Children and Young People’s Development Centre, 27 Peckham Road, London, SE5 8UH, jessica.turnbull@gstt.nhs.uk

Further information on the study, including the case definition and reporting instructions, are available from:

Surveillance of Incidence of first time diagnosis of Early Onset Depression in the United Kingdom and Republic of Ireland (EOD-UK & ROI) in children aged 3-13 years.

Background

There is very limited data on the epidemiology, presenting features and course of Early Onset Depression (EOD). Evidence suggests that those who develop this condition are associated with a more than fourfold increase risk of suicide attempts compared with adult-onset. Increasing knowledge regarding the number of cases and presentation of these children to the NHS is important for recognition of the condition, planning of service provision and developing management approaches. This study will aid this by identifying all new cases of EOD in the UK and ROI presenting to a consultant child psychiatrist, allowing review of the presentation, management and outcome at 1 and 2 years. 

Aims

  • To determine the incidence of first diagnosis of EOD in children between the ages of 3 years and before the 13th birthday.
  • To provide detailed descriptions of the presentation and clinical features of children with EOD and the current and follow-up management strategies.
  • To examine the pathways by which EOD cases are referred and the duration between symptom onset and diagnosis.

Funding

Northumberland Tyne and Wear NHS Foundation Trust.

Unrestricted educational grant from Lundbeck Ltd.

Ethical approval

This study has been approved by Research Ethics Committee (17/NE/0310), Confidentiality Advisory Group (17/CAG/0189), Public Benefit and Privacy Panel for Health and Social Care in Scotland (1718-0246-SHARMA) and has been granted HRA support to process patient identifiable information without consent.

Lead Investigators

Dr Aditya Sharma, Academic Department of Psychiatry and Northern Centre for Mood Disorders, Wolfson Research Centre, Campus for Ageing and Vitality, Newcastle upon Tyne, NE4 5PL; aditya.sharma@ncl.ac.uk

Co-investigators

Dr Eleanor Smith, Mr. Richard Lynn, Prof Daphne Korczak, Dr Paul Wilkinson, Dr Bernadka Dubicka, Dr Priya Hodgins, Dr Hani Ayyash, Dr Mohamed Mohamed-Bahgaat.

Research assistant

Miss Abigail Coulson

For further information on the study, including the case definition and reporting instructions, are available from:

Background

Sydenham’s chorea is a movement disorder which can occur in children and young people. The condition is associated with prior infection with the bacteria streptococcus. ‘Chorea’ is the term for abnormal movements described as rapid, irregular, aimless and involuntary; this means that the child cannot help making fast and uncoordinated movements that they do not plan or want to make. Children and young people often also have emotional and behavioural difficulties, such as anxiety, at the same time. Whilst SC may resolve within six months, symptoms may last for up to two years or more. SC can have an impact on the child’s ability to perform activities of daily living such as dressing, walking and writing. Although considered ‘rare’, little is known about the current pattern of this illness in the UK and the ROI

Aims

  • How many children with SC do child psychiatrists in the UK and ROI see over a year?
  • What are the most common symptoms?
  • How is SC currently assessed and managed in psychiatric services?
  • What are the outcomes of children with SC over a two-year period?
  • What is the impact on children’s education and functioning?

Funding

This study is funded by the Sydenham’s Chorea Association, a network of parents and professionals.

Ethical approval

This study has been approved by London Bloomsbury REC (REC reference: 18/LO/0760) and has been granted Section 251 HRA-CAG permission (CAG Reference: 18/CAG/0086). This study has been granted Public Benefit and Privacy Panel for Health and Social Care (PBPP) approval in Scotland (PBPP reference: 1819-0077).

Principal investigators

Dr Oana Mitrofan, Consultant in Child and Adolescent Psychiatry and Research Associate, University of Exeter Medical School, o.mitrofan@exeter.ac.uk; Dr Tamsin Newlove-Delgado, NIHR Academic Clinical Lecturer in Public Health, University of Exeter Medical School, t.newlove-delgado@exeter.ac.uk.

Co-investigators

Dr Michael Morton, Prof Tamsin Ford, Dr Brodie Knight, Prof Mary King, Dr Ming Lim, Mr Andrew Samuel, Ms Catriona Clark, Prof Sameer Zuberi.

Further information on the study, including the case definition and reporting instructions, are available from:

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