Investigating and improving care (education) and treatment reviews (C(E)TRs)

ISRCTN ISRCTN80009790
DOI https://doi.org/10.1186/ISRCTN80009790
Integrated Research Application System (IRAS) 335048
National Institute for Health and Care Research (NIHR) 158490
Sponsor South London and Maudsley NHS Foundation Trust
Funder National Institute for Health and Care Research
Submission date
28/09/2026
Registration date
30/09/2026
Last edited
30/09/2026
Recruitment status
Recruiting
Overall study status
Ongoing
Condition category
Other
Prospectively registered
Protocol
Statistical analysis plan
Results
Individual participant data
Record updated in last year

Plain English summary of protocol

Background and study aims
Care (Education) and Treatment Reviews, or C(E)TRs, were introduced in England in 2015 to help people with a learning disability and autistic people get the right support in the community and avoid unnecessary admission to a mental health hospital. However, there is limited evidence about how well C(E)TRs work. This study aims to find out whether community C(E)TRs reduce hospital admissions and improve people’s health, wellbeing and care.

Who can participate?
The study is for people aged 14 years or older who have a learning disability and/or are autistic, are receiving support from an NHS community mental health services, and are considered at increased risk of admission to a mental health hospital. Family members and paid carers of participants can also take part.

What does the study involve?
People with a learning disability and autistic people from different parts of England will be recruited to the study and followed-up over time. Researchers will collect information about hospital admissions, mental health, behaviour, quality of life, medication, use of health and social care services, and the care and support people receive. The information will be collected at the point of recruitment, at 6 months, and at 9 months. The information will be collected by questionnaires that a researcher will go through with the participant. The data that are collected will allow researchers to compare people who have a C(E)TR with people who do not.

What are the possible benefits and risks of participating?
People taking part may not receive a direct personal benefit. However, the information they provide may help improve C(E)TRs and the support provided to people with a learning disability and autistic people in the future.
The study is considered to be low risk. Completing questionnaires and assessments will take some time and may be tiring. Interviews may involve discussing difficult experiences, including times when community care has broken down or when hospital admission has been needed, and this could be upsetting. Participants can take a break or stop an interview if they wish, and the research team will help them access appropriate support if needed.

Where is the study run from?
The study is led by King’s College London (UK), in partnership with Queen Mary University of London and other universities and NHS organisations. Participants are being recruited through NHS services in different parts of England so that the study includes people from a range of geographical areas and communities.

When is the study starting and how long is it expected to run for?
August 2025 to February 2028

Who is funding the study?
The study is funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research Programme (reference NIHR158490)

Who is the main contact?
Dr Rory Sheehan, opticatstudy@kcl.ac.uk

Contact information

Dr Rory Sheehan
Principal investigator, Scientific, Public

Institute of Psychiatry, Psychology & Neuroscience
King's College London
London
SE5 8AF
United Kingdom

ORCiD logoORCID ID 0000-0002-4164-9661
Phone +44 (0)20 7848 0002
Email rory.sheehan@kcl.ac.uk

Study information

Primary study designObservational
Observational study designLongitudinal study
Scientific titleOptimising community C(E)TRs through understanding the experience of people with learning disability and autistic people and investigating their impact on care
Study acronymOptiCaT
Study objectives 1. Do C(E)TRs reduce hospital admissions (primary outcome) and duration of hospital stay in people with learning disability and/or autistic people who are at risk of psychiatric hospital admission?
2. Do C(E)TRs improve other clinical, health and social outcomes?
3. Are C(E)TRs cost-effective?
Ethics approval(s)

Approved 31/07/2025, Leeds West Research Ethics Committee (NHSBT Newcastle Blood Donor Centre, Holland Drive, Newcastle upon Tyne, NE2 4NQ, United Kingdom; -; leedswest.rec@hra.nhs.uk), ref: 25/YH/0119 

Health condition(s) or problem(s) studiedIntellectual (learning) disability or autism spectrum disorder
MethodologyThis is an observational prospective cohort study recruiting people aged 14 years and over with a learning disability and/or autism who are considered at increased risk of psychiatric hospital admission (as identified by being rated red or amber on the Dynamic Support Register [DSR]). Participants will be recruited through NHS community mental health services across diverse areas of England. Family or paid carers may also take part.

Participants will complete assessments at the start of the study and again at 6 and 9 months. Information will be collected from participants, carers and clinicians about psychiatric hospital admissions, mental health and behaviour, quality of life, unmet needs, use of health and social care services, medication and restrictive practices. Assessments can be completed face-to-face, by telephone or online. We would expect some people to receive a C(E)TR during follow-up and others will not.

The main outcome is admission to psychiatric hospital during follow-up. Secondary outcomes include psychiatric symptoms (measured by the Moss-PAS Check), behaviour that challenges (Behaviour Problems Inventory - Short form), unmet need (CANDID-R), quality of life (WHOQOL-DIS), health-related quality of life (EuroQoL Five Dimensions), service use (contacts with health and social care using a modified version of the Adult Service Use Schedule), all of which will be completed by the participant with learning disability or autism. Family carers who are enrolled will complete measures of family carer distress (Kessler Psychological Distress Scale), and carer health-related quality of live (EQ-5D-5L). Clinicians providing care to recruited participants will provide information on participant symptom severity (using the Clinical Global Impression-Severity scale), participant health and social functioning (measured with Health of the Nation Outcome Scale, HoNOS), use of restrictive practices (i.e. Mental Health Act, Deprivation of Liberty Safeguards), psychotropic medication, and whether a C(E)TR was conducted.

The main outcome will be psychiatric hospital admission during follow-up. Outcomes will be compared between participants who receive a C(E)TR and those who do not, to investigate whether C(E)TRs are associated with a reduced likelihood of hospital admission and better health and care outcomes.
Intervention typeOther
Primary outcome measure(s)
  1. Admission to psychiatric hospital measured using the modified version of the Adult Service Use Schedule (AD-SUS) and also provided by the clinician at baseline, 6 months, and 9 months
Key secondary outcome measure(s)

1. Psychiatric symptoms measured using the Moss Psychiatric Assessment Schedule - Check (Moss-PAS (Check)) at baseline, 6 months, and 9 months
2. Behaviour that challenges measured using the Behaviour Problems Inventory - Short Form (BPI-S) at baseline, 6 months, and 9 months
3. Unmet care needs measured using the Camberwell Assessment of Needs for Adults with Developmental and Intellectual Disabilities - Research version (CANDID-R) at baseline, 6 months, and 9 months
4. Quality of Life measured using the 13-item WHOQOL Disabilities module (WHOQOL-DIS) at baseline, 6 months, and 9 months
5. Health-related quality of life measured using the EuroQoL Five Dimensions - Three Levels questionnaire (EQ-5D-3L) at baseline, 6 months, and 9 months
6. Service use (health and social care contacts) measured using a modified version of the Adult Service Use Schedule (AD-SUS) at baseline, 6 months, and 9 months
7. Family carer distress measured using the Kessler Psychological Distress Scale (K6) at baseline, 6 months, and 9 months
8. Family carer health-related quality of life measured using the EuroQol 5-Dimension 5-Level questionnaire at baseline, 6 months, and 9 months
9. Clinician-rated participant symptom severity measured using the Clinical Global Impression-Severity (CGI-S) Scale at baseline, 6 months, and 9 months
10. Clinician-rated participant health and social functioning measured using the Health of the Nation Outcome Scales (HoNOS) at baseline, 6 months, and 9 months
11. Clinician-rated participant exposure to restrictive practices (physical, mechanical, or chemical restraint) measured using a questionnaire created by the research team at baseline, 6 months, and 9 months
12. Psychotropic medication prescribing measured using a questionnaire created by the research team at baseline, 6 months, and 9 months

Completion date29/02/2028

Eligibility

Participant type(s)
Age groupMixed
Lower age limit14 Years
Upper age limit99 Years
SexAll
Target sample size at registration300
Key inclusion criteria1. Children/adolescents (aged between 14 and 17 years, inclusive) or adults (≥18 years) with a clinical diagnosis of learning disability (of any degree) or autism (diagnosis based on service records, expected to conform to ICD-10 chapter F7- criteria for learning disability or ICD-10 F84 criteria for autism)
2. Under the care of a community mental health service (e.g., Child and Adolescent Mental Health Services [CAMHS], Community Learning Disability Team [CLDT], Community Mental Health Team [CMHT]) in a participating Trust
3. Rated as red or amber on the Dynamic Support Register (DSR)
4. Provide informed consent to taking part or, where an adult lacks capacity to consent to participate, a personal or nominated consultee has signed a declaration form or, in the case of children/adolescents (<18 years), a parent/guardian has signed a consent form
Key exclusion criteria1. No clinically-confirmed diagnosis of learning disability or autism
2. Not on the Dynamic Support Register
3. Currently admitted to a psychiatric hospital
4. Does not provide informed consent or, where an adult lacks capacity, there is no consultee declaration or, in the case of children/adolescents (<18 years) a parent/guardian has not signed a consent form
Date of first enrolment01/08/2025
Date of final enrolment28/02/2027

Locations

Countries of recruitment

  • United Kingdom
  • England

Study participating centres

Oxleas NHS Foundation Trust
Pinewood House
Pinewood PLACE
Dartford
DA2 7WG
England
South London and Maudsley NHS Foundation Trust
Bethlem Royal Hospital
Monks Orchard Road
Beckenham
BR3 3BX
England
North London NHS Foundation Trust
4th Floor, East Wing
St. Pancras Hospital
4 St. Pancras Way
London
NW1 0PE
England
East London NHS Foundation Trust
Robert Dolan House
9 Alie Street
London
E1 8DE
England
Central and North West London NHS Foundation Trust
Trust Headquarters
350 Euston Road
Regents PLACE
London
NW1 3AX
England
Lincolnshire Partnership NHS Foundation Trust Hq
NHS Foundation Trust
Carholme Court
Long Leys Road
Lincoln
LN1 1FS
England
Sussex Partnership NHS Foundation Trust
Trust Hq
Swandean
Arundel Road
Worthing
BN13 3EP
England
Cornwall Partnership NHS Foundation Trust
Carew House
Beacon Technology Park
Dunmere Road
Bodmin
PL31 2QN
England
Cheshire and Wirral Partnership NHS Foundation Trust
Trust Headquarters Redesmere
The Countess of Chester Health Park
Liverpool Road
Chester
CH2 1BQ
England
Tees, Esk and Wear Valleys NHS Foundation Trust
Trust Headquarters
West Park Hospital
Edward Pease Way
Darlington
DL2 2TS
England
Hertfordshire Partnership N H S
Harper Lane
Shenley
Radlett
WD7 9HQ
England
North East London NHS Foundation Trust
Goodmayes Hospital
157 Barley Lane
Ilford
IG3 8XJ
England
Surrey and Borders Partnership NHS Trust Hq
18 Mole Business Park
Randalls Road
Leatherhead
KT22 7AD
England
South West London and St George's Mental Health NHS Trust
Springfield Hospital
61 Glenburnie Road
London
SW17 7DJ
England

Results and Publications

Individual participant data (IPD) Intention to shareNo

Editorial Notes

30/09/2026: Study's existence confirmed by the HRA.