Live Well with Parkinson's RCT
Research type
Research Study
Full title
Live Well with Parkinson’s (as part of the program Personalised care for people with Parkinson’s Disease: PD-Care WP4)
IRAS ID
294372
Contact name
Anette Schrag
Contact email
Sponsor organisation
Royal Free Hospital
Duration of Study in the UK
2 years, 3 months, 0 days
Research summary
Research Summary:
Parkinson's disease is a progressive brain disorder affecting approximately 127,000 UK people. People with Parkinson’s have increasing movement difficulties and many other problems including falls, bladder and bowel disturbance, low mood, anxiety, fatigue, sleep disturbance, pain, and impaired memory. This can lead to increasing disability, reduced quality of life and unplanned hospital admissions. Management is often complex, and guidelines exist, but access to specialised care is often limited.
Self-management can allow people to take control and improve outcomes in the face of restricted resources and fragmentation of health care. There is evidence that supported self-management for people with a range of long-term health conditions can be clinically effective, decrease health care utilization and does not compromise patient outcomes.
Our research to date has involved identifying effective self-management components for people with Parkinson’s, co-designing with people affected by Parkinson’s a supported self-management toolkit known as ‘Live Well with Parkinson’s’, and testing the feasibility of this. This phase of research aims to evaluate whether the toolkit is beneficial at helping participant manage their symptoms and improve their quality of life.The study will provide:
1. An on-line and paper toolkit with information regarding Parkinson’s and living well, which can be tailored to the person with Parkinson’s, to help them plan and manage their care across different settings
2. A toolkit that allows people with Parkinson’s to identify priorities in their life and develop ideas and behaviour steps that enable them to live in accordance with their priorities
3. Training for professionals to support people with Parkinson’s and carers use the self-management toolTo achieve this, the study will work closely with a group of people affected by Parkinson’s to:
1. Conduct a large study (clinical trial) to test the positive impact and cost effectiveness of the ‘Live well with Parkinson’s’ toolkit if adopted by the NHS and its partners
2. Identify the resources needed to enable this approach to be rolled out across the NHS, if effectiveSummary of results:
This trial aimed to improve the care of people with Parkinson’s and their carers by using a newly developed self-management toolkit. People with Parkinson’s often manage a variety of symptoms daily, and similar interventions in other health conditions have shown to improve health outcomes, reduce the use of health services, and help individuals feel more in control of their health. The toolkit was designed to provide personalised information and advice, support symptom tracking and management, set goals, and make action plans with a facilitator over six months. It also aimed to fill gaps in health services and support conversations with healthcare professionals.
To test the effectiveness of the toolkit, participants were randomly divided into two groups: one group used the toolkit, while the other did not. This allowed researchers to compare the outcomes between the two groups. 346 people living with Parkinson’s took part. Participants were assessed at the start, after six months, and after twelve months. Small improvements were found in the main trial outcome, quality of life, but these were not significant. However, those who used the toolkit saw significant improvements in mobility, daily activities, and mental health, particularly in reducing depression. People living in rural areas benefitted the most. The toolkit saved costs to the NHS by reducing A&E admissions. Most participants found the toolkit acceptable to use and liked using it. The results showed that 82% of participants reported moderate to high use of the toolkit, 75% liked using it and 70% found it helpful in managing symptoms. Overall, the trial provided valuable insights into improving Parkinson’s care in the future.
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REC name
London - Harrow Research Ethics Committee
REC reference
21/LO/0562
Date of REC Opinion
18 Oct 2021
REC opinion
Further Information Favourable Opinion