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UCL Queen Square Institute of Neurology

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About the PD-Care study

This study aims to improve the care of people with Parkinson's who are living at home. It will do this by developing an effective new resource (Live well with Parkinson's), which will have online and paper versions. The aim is that the resource will help people with Parkinson's to become more involved in the management of their care, so that care is more tailored to their individual needs. The resource will include 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 with the help of health care professionals.

The study will also develop training for health care professionals in the use of the new resource so that they can better support people with Parkinson’s, and their partners/carers. 

To achieve this, the research team will work closely with a group of people affected by Parkinson’s to:

  • Review the existing research and management guidelines for Parkinson’s, and the self-management tools used in Parkinson’s and similar conditions 
  • Talk to people with Parkinson’s, their partners/carers and health care professionals about their experiences and goals for Parkinson’s care and self-care
  • Bring together the expertise of health care profesionals, people with Parkinson’s and their partner/carers to jointly design a self-management toolkit and a training programme for professionals
  • Test whether this toolkit is practical and acceptable, and make any necessary adjustments
  • Conduct a large study (randomised controlled trial) to test whether it makes a positive difference to the health and  lives of people with Parkinson’s. Also to test how cost-effective the approach would be if adopted by the NHS and its partners
  • Promote the uptake and implementation of the new resource. 

It is hoped that the Live well with Parkinson's resource will reduce disability and hospital admissions and will improve quality of life, and help health care professionals in the delivery of the best care.