Clinical and Cost Effectiveness of Positive Behaviour Support: a Trial (PBS community)

Many people with intellectual disability have challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Community intellectual disability services may have difficulties in helping people with challenging behaviour. Available research suggests that Positive Behaviour Support (PBS), a training system that teaches staff how to manage these situations, can benefit service users who may show improvements in challenging behaviour and quality of life. Previous researchers have published small studies on its effectiveness but these studies have methodological problems. The investigators do not know of any study so far that has examined the clinical and cost effectiveness of PBS that is provided by staff in routine clinical practice in community intellectual disability services. If PBS proved to be better than treatment as usual, it would have important implications for the management of a very vulnerable group of service users. In this trial, health staff will receive accredited training in PBS available in a manual written by experts in PBS. It will give details of how to understand challenging behaviour and develop a management plan and how to implement it and monitor whether it has achieved its goals. Twenty community intellectual disability services and 260 service users with mild to severe intellectual disability and challenging behaviour will be invited to take part in the study. The sample size calculations are based on our pilot study and allow for non participation of 10% and inflation due to the number of community intellectual disability teams and staff that will take part. The teams will be randomly allocated into one of two conditions. Half will be in the PBS arm (but will also have treatment as usual) and half will be in the treatment as usual only group. The investigators will carry out assessments of challenging behaviour, use of services, quality of life, mental health, aggression and family and paid carer burden at six and 12 months. The investigators will monitor treatment fidelity and the investigators will talk to a sample of paid and family carers, service users, staff and managers about what they think of the treatment and how best the investigators can deliver it in routine care. The main outcome is reduction in challenging behaviour at one year after the randomisation. The investigators will also carry out a health economic evaluation to examine the costs and consequences of staff training in PBS. The study will last for four years and the investigators will run it in community intellectual disability services in England. The investigators will follow the research and clinical governance guidance and seek ethical approval before the study starts.