Study of HAllucinations in Parkinson's disease, Eye disease, and Dementia (SHAPED)
We know visual hallucinations (seeing things that are not actually there) are common and that for many of those affected can cause significant distress and life consequences. Yet, we don’t know what happens to those affected, how best to manage the symptoms, and where to target NHS resources. The overall aim of SHAPED is to inform NHS practice and policy in relation to visual hallucinations and produce sets of guidelines for clinicians, patients and carers.
Why carry out the research?
How is the research being undertaken?
An estimated 2 million people in the UK have visual hallucinations associated with clinical conditions such as Parkinson’s disease, eye disease and ‘the dementias’ (including Alzheimer’s disease). As the population ages, more people are affected by these conditions and will have visual hallucinations . Visual hallucinations can cause significant distress, both for the person affected and their carers, and have wider implications for the NHS, such as triggering the move to a care home from living at home. People with visual hallucinations are seeking help and support from voluntary organisations in increasing numbers; yet, at present there are no specific NHS services for visual hallucinations or clarity about how to treat them.
What are the aims of SHAPED? We aim to:
- Assess the prevalence (and type) of visual hallucinations;
- chart the evolution of hallucinations over a 91-week (1 ¾ years) follow-up period;
- establish the impact of visual hallucinations on quality of life and emotional well-being;
- model the economic impact of visual hallucinations on NHS services and society as a whole;
- describe current pathways to care and the needs and experiences of people with visual hallucinations.
Where is it happening?
This is a multi-site study of visual hallucinations in eye disease, dementia, Parkinson’s disease and combined eye disease and dementia. There are three integrated workstreams: a follow-up study (workstream 1), a qualitative survey (workstream 2) and a pilot treatment trial (workstream 3). We aim to recruit over 800 people (some with, some without visual hallucinations) and carry out simple assessments and a series of questions about their health and the services they access. The follow-up study will monitor progress over the course of the study. The qualitative survey will involve semi-structured interviews with a subset of participants to develop quality of life and treatment satisfaction questionnaires, and interviews about experiences and needs.
Who is involved?
SHAPED has centres in London, Cambridge, Newcastle and Liverpool.
What is the timescale?
The study is funded by the National Institute for Health Research (NIHR). The main co-ordinating centre is the South London and Maudsley NHS Foundation Trust (sponsors of the study) and the Institute of Psychiatry, King’s College London. The Chief Investigator is Professor Robert Howard and the local Principal Investigator is Dr Dominic ffytche.
Participant recruitment will start in August 2014 and continue until January 2017. Follow-up assessments will finish in 2018. Analysis and dissemination will be completed by the end of 2018.
To find out more please contact Dr Rebecca Pinto (Trial Manager)
The Shaped Team