Clinical and cost evaluation of intensive support team (IST) models for adults with intellectual disabilities who display challenging behaviour: a comparative cohort study protocol

Abstract

IntroductionApproximately 17% of adults with intellectual disabilities (ID) living in the community display behaviours that challenge. Intensive support teams (ISTs) have been recommended to provide high-quality responsive care aimed at avoiding unnecessary admissions and reducing lengthy inpatient stays in England. We have identified two models of ISTs (model 1: enhanced provision and model 2: independent provision). This study aims to investigate the clinical and cost-effectiveness of the two models of ISTs.Methods and analysisA cohort of 226 adults with ID displaying behaviour that challenges who receive support from ISTs from each model will be recruited and assessed at baseline and 9 months later to compare the clinical and cost-effectiveness between models. The primary outcome is reduction in challenging behaviour measured by the Aberrant Behaviour Checklist-Community (ABC-C). The mean difference in change in ABC score between the two IST models will be estimated from a multilevel linear regression model. Secondary outcomes include mental health status, clinical risk, quality of life, health-related quality of life, level of functioning and service use. We will undertake a cost-effectiveness analysis taking both a health and social care and wider societal perspective. Semistructured interviews will be conducted with multiple stakeholders (ie, service users, paid/family carers, IST managers/staff) to investigate the experience of IST care as well as an online survey of referrers to capture their contact with the teams.Ethics and disseminationThe study was approved by the London–Bromley Research Ethics Committee (REC reference: 18/LO/0890). Informed consent will be obtained from the person with ID, or a family/nominated consultee for those lacking capacity and from his/her caregivers. The findings of the study will be disseminated to academic audiences, professionals, experts by experience and arm’s-length bodies and policymakers via publications, seminars and digital platforms.Trial registration numberClinicalTrials.gov Registry (NCT03586375).

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England

“…This is the first study in our knowledge to explore the views and experiences of multiple stakeholders of IST care in England. This qualitative study is part of a wider research programme that provided an overview of the current operation of ISTs and evaluated the clinical and cost effectiveness of two IST models in England (Hassiotis et al, 2021, 2022). Findings suggest that ISTs are often well received by family and paid carers and adults with intellectual disabilities.…”

“…In phase two of the larger study (Hassiotis et al, 2021), 21 ISTs were enrolled, of which seven case study sites were selected for the current qualitative study. These were selected to include both IST service models (enhanced and independent), and to capture other forms of service variability within each model, including location in rural or urban areas, caseload size, funding arrangements, and length of service existence (see Supplementary Material S1).…”

“…This study is focused on ISTs that operate principally to address behaviour that challenges rather than mental ill health in adults with intellectual disabilities. It is part of a multicentre evaluation study of the two models of IST care operating in England (Hassiotis et al, 2021(Hassiotis et al, , 2022.…”

Investigating the experience of professional carers supporting individuals with intellectual disability who were at risk of admission – a qualitative study

“…It is estimated that there are 1.5 million people in the UK with an intellectual disability (Hassiotis et al , 2021), of whom approximately 1.1 million are adults (Mencap, 2021). As few as 1 in 4 people with intellectual disabilities (ID) may be formally registered with health services (Hatton et al , 2016).…”

The effectiveness of positive behaviour support in reducing challenging behaviour and increasing quality of life for individuals with intellectual disability

“…What is the efficacy of PBS in supporting people with CB that is of high frequency and/or severity (LaVigna and Willis, 2012)? Studies have demonstrated the effectiveness of PBS in reducing behaviours that are both high in frequency and intensity (Hassiotis et al , 2021) and low in frequency in both community and inpatient settings (Hastings et al , 2013). The framework is cost-effective and easily accessible when supporting carers to apply the taught skills to help service-users to enhance their QoL (Grey et al , 2016).…”