Title: Clinical and cost evaluation of intensive support teams (IST) for adults with intellectual disabilities and challenging behaviour
Funder: Department of Health and Social Care

Abstract: Approximately 17% of adults with intellectual disabilities (ID) (constitute approximately 1% of the population) (1) living in the community present with serious challenging behaviour (2). As many as 100,000 are estimated to be at risk of admission due to challenging behaviour and failure of community services to manage them (3). There are ongoing concerns that these individuals are subject to increased rates of hospitalisation, unnecessary long term use of psychotropic medication, poorer health, abuse and exclusion (4). Intensive Support Teams (IST) have been recommended as a way of providing high quality responsive care aiming at avoiding unnecessary admissions or reducing inpatient length of stay (3). However, there is little information to recommend a preferred IST model and there has not been any comprehensive attempt to describe IST outcomes. Commissioners require clear information about what works in order to fund appropriate services. NG11 (5) reports the state of evidence thus: It is widely recognised that locally accessible care settings could be beneficial and could reduce costs but there is no strong empirical evidence to support this. Objectives: 1. To create a typology of IST currently operating in England; 2. To generate evidence on the effectiveness of different IST models which best support improved outcomes for adults with challenging behaviour; 3. To estimate the costs of different IST models and investigate cost-effectiveness; 4. To understand how the IST impact on the lives of adults with ID and challenging behaviour, their families and the local services; 5. To generate evidence to inform and support decision making on commissioning IST for adults with ID and challenging behaviour . Methods: the proposed study has two phases: phase 1 (9 months) includes a national survey (England) of ISTs which leads to the typology of IST models. Service managers of community ID teams (CIDT) will be approached to first identify whether they have such a service locally and then a piloted and refined survey will be carried out. Outputs include mapping and distribution of ISTs in England; description of ISTs' organisation and service delivery; and a typology of IST service models. Phase 2 (24 months and 3 months for analyses and report writing) includes a mixed methods evaluation of up to 4 IST models. We will collect both patient level outcomes at 2 assessment points (baseline and 9 months) and service level outcomes over 9 months. Statistical analysis will compare outcomes across ISTs and identify which are most associated with positive outcomes (e.g. reduced challenging behaviour). The costs of delivering the different models will be calculated and compared across all models. Details of the statistical and costs analyses are shown in the detailed project description. We will collect qualitative data to understand the impact of the different models, and the experiences and views of key stakeholders. We will follow with a project report and a wide range of dissemination activities. Main benefits: In line with NHS England guidance in managing people with ID locally and effectively, the proposed work will provide commissioners and clinicians with the evidence they need to deliver high quality care to an under-served population group (6).

Lay abstract: 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 (probably up to 4). Then we will look at three services in each type of IST 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 types of IST are at reducing challenging behaviours, and which one service users, their families and people who work in other connected services prefer most. We will look at where the different types of IST operate, how much they cost and will investigate which types of IST represent best value for money. 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.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH