Many people are working towards better treatments for Alzheimer’s and other forms of dementia. But developing better medicines is not the only way to improve the lives of people affected by memory loss.
Being able to live well and independently for as long as possible is a really important goal. It requires an understanding of how diagnosis and current treatments impact patients’ lives and health outcomes.
To understand the patient and care-giver journeys from the initial memory assessments through the early period of treatment and care, the CYNGUS study will collect clinical data and self-reported outcomes from 500 people with memory loss and their supportive partners for one year. The project will define what information can help map the best care pathway for each individual patient, and how and when that information should be collected. CYGNUS will assist in the development of new digital healthcare technologies to support healthcare decisions that improve the lives of those
affected by memory loss.
To help understand and improve the quality of care for patients with dementia, it is important to measure both the standard medical outcomes which the clinical team use to guide care, and the outcomes that matter most to patients, such as quality of life and independence in daily living.
Tracking the right clinical and patient reported outcomes can help doctors and patients together make timely and informed decisions about care. Better data-driven healthcare decisions can help people to live well with dementia and may reduce costs to the NHS by targeting the right services and treatments to each individual.
Currently, in memory assessment services around the UK, outcome information is collected in varied, non-standardised ways. This study will help to define standardised outcome datasets and determine the best ways of collecting the data, including the use of technologies in the clinical care and home environments.
The CYGNUS study is exploring both the feasibility of collecting different types of data from different informants and across different settings, and the potential of the dataset to inform the care of people with memory problems. A large dataset will be collected from the study participants; 250 patients and 250 supportive partners. The complete dataset will be collected at a baseline visit and again 12 months later, with a smaller self-reported outcome dataset collected at 3 monthly intervals during the study timeframe.
The dataset will include information about the patient’s pathway through the memory assessment services and the care interventions provided, such as different therapies and support services.
It will also include the recently published ICHOM Standard Set for Dementia and additional demographic factors, health and clinical history, diagnosis, clinical outcomes, self-reported outcomes of activity, sleep, quality of life and mood, finances and resources, medical events and service utilisation.
Both patients and their supportive partners will be given the option of additionally participating in two sub-studies:
Mobile data collection: using a web/mobile app to collect self-reported data on a weekly basis from home
Wearable device: using a wearable device that looks like a watch to collect information on activity and sleep over a 12 weeks period
Manchester Mental Health and Social Care Trust is one of only five mental health and social care NHS organisations in the country. The Trust offers a wide spectrum of mental health, social care and wellbeing services to meet the needs of adults of working age and older adults in Manchester. The Trust provides inpatient care and community services for service users still living at home. www.mhsc.nhs.uk
Mersey Care NHS Foundation Trust provides specialist inpatient and community mental health, learning disabilities, addiction management and acquired brain injury services for the people of Liverpool, Sefton and Kirkby, Merseyside. The Trust also provides secure mental health services for the North West of England, the West Midlands and Wales, one of only three Trusts in the country to provide this service. www.merseycare.nhs.uk
Northumberland Tyne and Wear NHS FoundationTrust is one of the largest mental health and disability Trusts in England working from over 60 sites across Northumberland, Newcastle, North Tyneside, Gateshead, South Tyneside, Sunderland and North Easington, with a number of regional and national specialist services. The Trusts services include inpatient care, community services and specialist adult and young people’s services. www.ntw.nhs.uk
Tees, Esk and Wear Valley NHS Foundation Trust provides a range of mental health, learning disability and eating disorder services for the people living in County Durham and Darlington, the Tees Valley and most of North Yorkshire. The Trust works in partnership with local authorities and clinical commissioning groups, a wide range of other providers including voluntary organisations and the private sector, as well as service users, their carers and the public. www.tewv.nhs.uk
Cygnus was reviewed by the Central London Research Ethics Committee (REC Ref. 16/LO/0354)
IXICO’s innovative and proprietary digital healthcare technologies help those involved in researching and treating serious diseases to capture and analyse clinical data to make rapid, informed decisions. In clinical research this includes the phenotyping of patients, quantification of disease pathology and measurement of patient outcomes. In clinical practice the mobile health and digital decision support technologies aid diagnosis, patient engagement and monitoring. IXICO is also collaborating with partners to develop companion digital health products targeted at improving patient outcomes. The Company’s brain health focus includes Alzheimer’s disease, Huntington’s disease, Multiple Sclerosis, behavioural health, child and adolescent mental health.