Title: Towards an evidence-based clinical management of visual hallucinations: prevalence, prognosis, impact and pathophysiology
Funder: Department of Health and Social Care

Abstract: Aims and objectives The ambition of the programme is to change NHS practice and policy in relation to visual hallucinations. By 2017: i) a companion set of guidelines will be available for NHS professionals and patients for the management of visual hallucinations ii) best candidate treatments for visual hallucinations will have been identified with data to support application for a large-scale pragmatic treatment trial iii) economic, quality of life and current practice evidence will be available to plan and prioritise the NHS response to the problem. Background An estimated 2 million people in the UK have visual hallucinations although the true prevalence may be higher and the figure is set to rise as the population ages. The hallucinations occur in a range of clinical conditions of which dementia, eye disease and Parkinson’s disease are the most important in terms of the number of patients affected. It is known that the hallucinations cause significant distress for patients and have wider implications for the NHS, for example triggering hospital admission or the move to a care setting from independent living and treatment with medication that poses significant risks without evidence of benefit. Yet despite a clear need for help as evidenced by increasing numbers of patients seeking help and support from voluntary organisations, there are currently no NHS services for such patients and no evidence-based guidance on how to treat the symptom. Furthermore, it is not possible at present to develop guidelines or policy due to a lack of evidence in a number of key areas. Research plans The programme will consist of 4 integrated workstreams to provide evidence upon which to base a companion set of guidelines for NHS professionals and patients with visual hallucinations. Workstream 1 will provide core prevalence and prognosis data on visual hallucinations and identify patients for other workstreams. Workstream 2 will develop disease-specific quality of life questionnaires for use in patients with i) Parkinson’s disease and ii) dementia equivalent to those questionnaires developed previously for eye diseases. It will also use qualitative methods to explore current practice for visual hallucinations within NHS and social care settings. Workstream 3 will assess economic and QALY impact of visual hallucinations for the NHS. Workstream 4 will provide pilot and feasibility evidence for large scale treatment trials for visual hallucinations. Research team The programme brings together centres with expertise in different clinical contexts and strong track records in applied research to build a unique, internationally competitive, team of visual hallucination and applied methods experts. Programme management The overall aims and outcomes of the programme will be overseen by a cross-disciplinary workgroup with representation from key clinical stakeholders, patient / public organisations and patients with visual hallucinations. The monitoring and co-ordination of workstreams will be through a steering committee. Research environment The programme involves leading applied research centres in London (Institute of Psychiatry and Royal Holloway), Cambridge and Newcastle. The Mental Health of Older Adults and Dementia Clinical Academic Group within King’s Health Partners will lead the programme. The centres have well established links with public and patient organisations for eye disease, dementia and Parkinson’s disease. Anticipated outputs, outcomes and impact The programme will produce a companion set of guidelines in 2017 for clinicians and patients focusing on the assessment and management of the symptom, its prognosis and impact in different clinical contexts and information on recognising the symptom, its implications and seeking further help. It will also provide evidence from which to design future large-scale treatment trials and plan and prioritise NHS services. Dissemination of findings Findings will be disseminated to: i) NHS professionals ii) NHS commissioners; iii) Social Care; iv) patient / public organisations. Participants will receive a newsletter on developments and progress. The scientific findings will be published in academic papers in high impact journals and presented at conferences. Patient and public involvement The programme is a direct response to patient demand for advice on visual hallucinations. Patients themselves and their representative organisations will be members of the working group and play a key role in guideline development. Ethical implications Safeguards are in place to i) protect patients with cognitive impairment who lack capacity to consent and ii) support patients who may be discussing their experience of hallucinations for the first time. Provision has been made for patients in whom unsuspected eye disease or dementia is detected as a result of their participation in the programme.

Lay abstract: An estimated 2 million people in the UK repeatedly see things that are not actually there – termed visual hallucinations. The hallucinations are associated with many clinical conditions of which eye disease, Parkinson’s disease and ‘the dementias’ (including Alzheimer’s disease) are the most important in terms of the number of patients affected. The hallucinations cause significant distress for patients and carers and have wider implications for the NHS, for example triggering the move to a care home from living at home or treatment with medication that poses significant risks but without evidence of benefit. Patients with the symptom are seeking help and support from voluntary organisations in increasing numbers yet, at present, there are no NHS services for such patients and we do not even know whether those that need help are being identified by current services. Perhaps most importantly we do not know how to treat the symptom and the advice given to patients with dementia or Parkinson’s disease often contradicts that given to patients with eye disease. This poses a particular problem for the estimated 120,000 patients with visual hallucinations who have both eye disease and dementia as it is unclear whether they should be given the treatment recommended for visual hallucinations in dementia or that for visual hallucinations in eye disease. The programme sets out to fill the gaps in our understanding of the nature and scale of the problem. It will release a sister set of guidelines in 2017 for NHS professionals on how to manage the symptom and for patients to inform them about the symptom and advise where to seek further help. The guidelines will be based on new evidence collected within the programme in relation to: i) how many people have visual hallucinations in the different clinical contexts studied ii) what happens to the hallucinations over time. iii) how the hallucinations impact on quality of life and their economic cost iv) what sorts of services are needed. Our current understanding is so limited that we do not even know whether different types of treatment are needed for people with eye disease, dementia and Parkinson’s disease or whether a single type of treatment will suffice for all these conditions. The programme will provide preliminary evidence on this issue and candidate treatments for future large-scale treatment trials.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE;7.3 MANAGEMENT AND DECISION MAKING
Health categories: EYE;NEUROLOGICAL