Title: Eye movement desensitisation and reprocessing for symptoms of post-traumatic stress disorder in adults with intellectual disabilities (Trauma-AID)
Funder: Department of Health and Social Care

Abstract: Background:_x000D_ People with intellectual disabilities (PwID) are a vulnerable group at increased risk of all types of abuse who are often further disadvantaged by being unable to describe what has happened, their feelings or emotions. PwID exposed to traumatic events, particularly abuse, display typical symptoms of post-traumatic stress disorder (PTSD) (anxiety, flashbacks, recurring nightmares), as well as more complex presentations of PTSD (difficulty in regulating emotions; feelings of shame, fear, guilt and worthlessness; difficulties in sustaining relationships and feeling close to others), and are also likely to display challenging behaviours. These patients are at risk of not receiving treatment for PTSD, being given inappropriate medication as 'treatment', or admitted to a mental health hospital where they remain for long periods at further risk of traumatic experiences. They require support from skilled and specialist NHS intellectual disability (ID) services. Lack of timely effective psychological treatments carries a high human and financial cost._x000D_ Intervention:_x000D_ We do not know if treatments used with the general population would be effective or provide value for money when used with PwID, as there have been no controlled trials of psychological therapies for PTSD in PwID. This study aims to address this need. Eye movement desensitization and reprogramming (EMDR) is effective for the general adult population: initial treatment involves history taking, explaining PTSD and how EMDR can help, and working with patients on strategies to calm their emotions (psycho-education and stabilisation: PES); in the later EMDR stages the patient focuses on memories of past traumatic events while making controlled eye movements that engage attention and enable the therapist to manage the intensity of the patient’s distress. The standard EMDR protocol is difficult to use with PwID because the eye movement exercises are unfamiliar, and their purpose is difficult to explain. However, it can be made more accessible by expanding the introductory PES phase and appropriately adapting techniques that are used in the treatment of traumatised children. In this project we will investigate whether an adapted EMDR protocol works for PwID, compared with treatment as usual (TAU) – which could include any non-trauma-focussed intervention._x000D_ Research plan:_x000D_ 144 patients with ID referred for treatment and confirmed as having PTSD will be allocated randomly to receive either PES+EMDR or TAU. PTSD, mental health problems and challenging behaviour will be assessed before treatment, after PES, after EMDR, and 6 months later. Reasons for dropping out will be recorded and we will measure how well the treatment is delivered. We will also collect data about the costs of providing treatment, whether treatment improves patients’ and their carers’ quality of life, and if it decreases the costs of supporting patients in the community. At the end of the study we will interview a sample of patients, therapists and carers to find out their views of the treatment, and the impact. We will publish and share the findings in a range of formats to different audiences, and present them at scientific and public meetings._x000D_ Main aims:_x000D_ We aim to find out if EMDR can be adapted to improve the mental health and quality of life of PwID who experience PTSD; whether the EMDR protocol provides value for money; and whether the outcomes are influenced by the complexity of the PTSD presentation.

Lay abstract: Research question:_x000D_ Is an adapted eye movement desensitization and reprogramming (EMDR) protocol effective and cost-effective for people with intellectual disabilities (PwID) and post-traumatic stress disorder (PTSD)?_x000D_ Background:_x000D_ PTSD is a common mental disorder that may develop following exposure to traumatic events. PwID are a vulnerable group who are at increased risk of all types of abuse. Common presenting problems for PwID exposed to traumatic events, particularly abuse, include typical symptoms of PTSD (re-experiencing, avoidance and hyper-arousal), and further symptoms characteristic of more complex presentations of PTSD (e.g. difficulty in regulating emotions and sustaining relationships; feelings of shame, guilt and worthlessness), as well as challenging behaviours. These patients are extremely complex and challenging, requiring highly specialist NHS ID services, and are at risk of admission to hospital. _x000D_ There have been no controlled trials of psychological therapies for PTSD in PwID. EMDR is an effective treatment in the general adult population. It includes an initial phase of psycho-education and emotional stabilisation (PES), before the main treatment phase in which the patient focusses on memories of past traumatic events while making controlled eye movements (EMDR). The standard EMDR protocol is difficult to use with PwID because the eye movement exercises are unfamiliar, and their purpose is difficult to explain. However, it can be made more accessible to PwID and acceptable to therapists by expanding the introductory PES phase and using some techniques developed for use with traumatised children, appropriately adapted for adults). _x000D_ Aims and objectives:_x000D_ This study is a randomized controlled trial of an adapted EMDR protocol for PwID, compared with treatment as usual (TAU), which will be as defined by the therapist, and could include any non-trauma-focussed intervention. We aim to determine whether EMDR improves the mental health and quality of life of PwID who suffer PTSD; whether the EMDR protocol is cost-effective; and whether the outcomes are influenced by the complexity of the PTSD presentation._x000D_ Methods:_x000D_ Within 4 large NHS Trusts, a total of 144 patients with ID referred for treatment, and who are confirmed using ICD-11 criteria as having PTSD, will be allocated randomly to receive either PES+EMDR or TAU. Specialist ID clinicians will be trained and supervised to deliver the protocol. Patients will be assessed for PTSD, mental health, quality of life and challenging behaviour, before treatment and at 4 (after PES), 8 (after EMDR), and 14 month follow-up. The primary outcome is a measure of PTSD at the 8-month follow-up. Health economic data will be collected before treatment and at 14-month follow-up. A process evaluation will include, inter alia, a description of TAU, assessment of fidelity of treatment delivery, and interviews with samples of patients, therapists and carers. _x000D_ Timelines for delivery:_x000D_ 48 months overall duration, including nested feasibility (to m.12) and internal pilot (to m.18) studies._x000D_ Anticipated impact and dissemination:_x000D_ We will publish the findings, present them at scientific and public meetings, and disseminate them widely to professional and lay audiences. If the intervention is supported we would expect it to be adopted as a standard pathway for PwID with PTSD. We also anticipate a heightened awareness of the prevalence and potential treatability of PTSD in this population

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH