UCL Queen Square Institute of Neurology


About the PD-Care Study

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The aim of this study is to improve the care of people with Parkinson's who are living at home. The study team, in collaboration with people with Parkinson's, have developed a new resource available online and as a paper version; Live well with Parkinson's toolkit. We hope that use of the toolkit will help people with Parkinson's and their carers to be comre involved in the management of their care, so the care is more specific for individuals needs. 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 have 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 will be completed to assess the effectiveness of the toolkit:

  • Conduct a large randomised controlled trial to test effectiveness of the toolkit to make a positive difference to the health and lives of people with Parkinson's. This will include 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 information on how to get involved please click here

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