Intensive Support Teams Study

NCT03586375 | Completed DMC

• 1 other identifier: 16/0456
• Study Type: observational
• Target: 226
• Locations: 1 country
• Sites: 16

Brief Summary

About 17% of people with ID living in the community have challenging behaviour such as aggression to others or property, self-injury or hyperactivity. There are concerns that adults with ID and challenging behaviour over-use medication, spend large periods of time in hospital, and miss out on living in the community. Hospital care is expensive, and costs are increasing. NHS England has produced draft guidance about Intensive Support Teams (ISTs) proposing that they should be part of all community ID services in England. However, there is currently very little evidence about how effective ISTs are. The people who pay for Health and Social Care services (commissioners) would like more information, and this project aims to provide this. We propose to do a project over 36 months. It will be in two parts. First we will find out about how many, and what type of ISTs exist in England, by asking service managers about their service, their staff, and the work they do. With this information, we will identify different models of ISTs. Then we will look at several services in each model to compare how they work with people with ID and other local services. We will collect data twice over 9 months to see which model(s) work best. We will also carry out interviews with people who use ISTs, family and paid carers, and referrers to ISTs to find out about their experiences of these services, and how happy they are with them. Analysing and putting this data together will tell us about how effective each of the models are at reducing challenging behaviours, how much they cost, and which one service users, their families and people who work in other connected services prefer most. We will tell people about our results at conferences and in academic and services journals. We will ask our group of involved service-users and family carers to guide us, and help us tell other people about the results. We have a team of clinicians and academics who are experts in all aspects of the research, e.g. statistics, ID, service evaluations, and in running ISTs. We will follow research rules and recommendations to make sure we carry out safe, ethical and rigorous research.

Conditions

Intellectual Disability

Outcome Measures

Primary Outcomes (1)

• Challenging behaviour Aberrant Behaviour Checklist-Community version (ABC-C)

  This is an established and internationally used carer administered measure of challenging behaviour.

  0-9 months

Secondary Outcomes (5)

• Carer reported Psychopathology Assessment for Adults with Developmental Disabilities checklist (PASADD Checklist)

  0-9 months

• Threshold Assessment Grid (TAG)

  0-9 months

• QoL-Q Schalock and Keith 1993

  0-9 months

• EQ 5D

  0-9 months

• Client Service Receipt Inventory (CSRI)

  0-9 months

Interventions

Intensive Support Team Care OTHER

Intensive Support Teams (ISTs) are specialist teams which have been advocated for many years as the right services to help people with intellectual disabilities (ID) and challenging behaviour stay in their local communities. They may be staffed by one or more professions, e.g. psychology, nursing, psychiatry, and usually deliver interventions such as positive behaviour support and accept people with ID who are in a crisis when challenging behaviour emerges or provide support when a person is admitted to a local inpatient facility.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults with mild to profound intellectual disability

You may qualify if:

• Service users - Eligible to receive support from IST service; mild to profound intellectual disability; aged 18 years and over/ Service - IST adheres to one of chosen models, has been operational for at least 12 months, there is commitment to fund it for the study duration and it can achieve sample size estimates.

You may not qualify if:

• Service users - Primary clinical diagnosis of personality disorder of substance misuse; relapse in pre-existing mental disorder; decision taken by clinical team that a referral to the study would be inappropriate (e.g., there is an open complaint investigation).

Sponsors & Collaborators

• University College, London: lead

Study Sites (16)

Devon Partnership NHS Trust

Barnstaple, United Kingdom

Location

Cheshire and Wirral Partnership NHS Foundation Trust

Chester, United Kingdom

Location

Derbyshire Healthcare NHS Foundation Trust

Derby, United Kingdom

Location

London North West University Healthcare NHS Trust

Ealing, United Kingdom

Location

Care Plus Group

Grimsby, United Kingdom

Location

Hertfordshire Partnership University NHS Foundation Trust

Hatfield, United Kingdom

Location

Barnet, Enfield and Haringey Mental Health Trust

London, United Kingdom

Location

Nottinghamshire Healthcare NHS Foundation Trust

Nottingham, United Kingdom

Location

Midlands Partnership NHS Foundation Trust

Shrewsbury, United Kingdom

Location

Southern Health Foundation Trust

Southampton, United Kingdom

Location

Somerset Partnership NHS Foundation Trust

Taunton, United Kingdom

Location

Cornwall Partnership NHS Foundation Trust

Truro, United Kingdom

Location

Hounslow & Richmond Community Healthcare

Twickenham, United Kingdom

Location

East London NHS Foundation Trust

Whitechapel, United Kingdom

Location

Worcestershire Health and Care NHS Trust

Worcester, United Kingdom

Location

South West Yorkshire Partnership NHS Foundation Trust

York, United Kingdom

Location

Related Publications (1)

• Hassiotis A, Kouroupa A, Jones R, Morant N, Courtenay K, Hall I, Crossey V, Romeo R, Taggart L, Langdon P, Ratti V, Kirchner V, Lloyd-Evans B. Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol. BMJ Open. 2021 Mar 30;11(3):e043358. doi: 10.1136/bmjopen-2020-043358.

  PMID: 33785489 DERIVED

MeSH Terms

Conditions

Intellectual Disability

Condition Hierarchy (Ancestors)

Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Neurodevelopmental Disorders; Mental Disorders

Study Design

• Study Type: observational
• Observational Model: ECOLOGIC OR COMMUNITY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 2, 2018
• First Posted: July 13, 2018
• Study Start: August 31, 2018
• Primary Completion: May 31, 2020
• Study Completion: April 30, 2021
• Last Updated: June 3, 2021

Record last verified: 2021-06

Locations

GB (16)