About the PD-Care Study

Watch Live Well with Parkinson's: About the Study on YouTube.

This study aimed to improve the care of people with Parkinson's who are living at home. The study team, in collaboration with people with Parkinson's, developed a new resource available online and as a paper version; the Live well with Parkinson's toolkit. We hope that use of the toolkit will help both people with Parkinson's and their carers to become involved in the management of their care and result in more individualised care that is specific to the needs of each patient. It is hoped the the Live well with Parkinson's toolkit will help to reduce disability and hospital admissions and will improve quality of life, and help healthcare professinals to deliver the best care. The toolkit includes information about how to keep healthy and independent, guidance on what to do when problems arise and where to access resources, and how to manage Parkinson's symptoms with the help of healthcare professionals. The study team also developed training to enable healthcare professionals to use the toolkit, so they can confidently support people with Parkinson's and their partners/carers to use it themseleves.

As part of this project, the following work has been completed to achieve this: 

  • Systematically reviewed the existing research and management guidelines for Parkinson's and the self-management tools used in Parkinson's and similar conditions
  • Talked to people with Parkinson's, their partners/carers and healthcare professionals about their experiences and goals for Parkinson's self-management
  • Collated this information in collaboration with experts and people with Parkinson's in a self-management toolkit and training programme for professional
  • Tested the feasibility and acceptability of the toolkit with 35 people with Parkinson's

Moving forward the following work is being completed to assess the effectiveness of the toolkit:

  • A large randomised controlled trial testing effectiveness of the toolkit to make a positive difference to the health and lives of people with Parkinson's. This includes a cost-effectiveness analysis to determine if it would be suitable for the NHS and its partners
  • If effective, promote the uptake and implementation of the toolkit into standard care
 

If you would like an update on our findings so far please click here