DIAMOND-Lewy: A pilot study of care provided by NHS services.

  • Research type

    Research Study

  • Full title

    Improving the diagnosis and management of neurodegenerative dementia of Lewy body type in the NHS. Work Package 5A and 5B: A pilot cluster randomised study of the management toolkit in the NHS secondary care services

  • IRAS ID

    197104

  • Contact name

    John O'Brien

  • Contact email

    john.obrien@medschl.cam.ac.uk

  • Sponsor organisation

    Northumberland Tyne and Wear NHS Foundation Trust

  • ISRCTN Number

    ISRCTN11083027

  • Duration of Study in the UK

    3 years, 0 months, 1 days

  • Research summary

    Dementia with Lewy Bodies (DLB) and Parkinson’s Disease Dementia (PDD) together are known as Lewy Body Dementia (LBD). They share common clinical features and biology, and also respond to similar approaches to management.

    Currently there is evidence of under recognition and inappropriate management of people affected by LBD, even in specialist hospital services. The signs and symptoms of LBD can be very hard to detect. Ensuring appropriate management of dementia is central to improving care for patients.

    At the moment there is no simple tool that includes the range of clinical symptoms for LBD, and no unified evidence based management care pathway. Currently there is not enough information to say if any one method used by doctors is better than the others for effective patient management.

    This study is looking to see if a newly developed management toolkit will result in symptom improvement, increased quality of life and decreased carer stress. 8 hospital services have agreed to take part in this study. Services will be cluster randomised to use either the management toolkit or continue with their usual management methods. Patients and their carers/informants will be asked a serious of questions during 3 study visits – baseline, 3 and 6 months after baseline. This will provide data about the impact of the toolkit on patient symptoms, outcomes, quality of life and carer stress. This pilot study will allow an initial comparison to be made across the services between the usual management methods and the new management toolkit.

  • REC name

    West Midlands - Coventry & Warwickshire Research Ethics Committee

  • REC reference

    16/WM/0025

  • Date of REC Opinion

    17 Feb 2016

  • REC opinion

    Further Information Favourable Opinion