PD-Care

• Research type

  Research Study

• Full title

  PERSONALISED CARE FOR PEOPLE WITH PARKINSON’S DISEASE

• IRAS ID

  235545

• Contact name

  Anette Schrag

• Contact email

  a.schrag@ucl.ac.uk

• Sponsor organisation

  Royal Free Hospital

• Duration of Study in the UK

  4 years, 11 months, 29 days

• Research summary

  Parkinson's disease (PD) is a progressive brain disorder affecting approximately 127,000 UK people.People 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.

  A personal care plan is developed by professionals with patients and their carers, to address specific problems.It can also help healthcare professionals deliver high quality, evidence-based care. A key component is personalised self-management guidance for patients and carers to use in daily life; most useful when backed up by specifically trained health and care professionals.Currently, no standardised care plan for people with Parkinson’s exists.

  This research aims to develop and evaluate a practical approach to personalise and improve care of people with Parkinson’s living at home, using an effective self-management tool and care plan supported by trained healthcare professionals; and thus increasing the active involvement of people with Parkinson’s and their carers in managing the condition.

  The study will provide:
  1. A resource to provide adaptable personalised care plans, tailored to the person with Parkinson’s and carers, to help them plan and manage their care across different settings
  2. A resource to help support personalised and self-care, including keeping healthy and independent, and guidance on addressing problems
  3. Training for professionals to support people with Parkinson’s and carers use the care plan and self-management tools

  To achieve this, the study will work closely with a group of people affected by Parkinson’s to:
  1. Review evidence and tools including self-management in Parkinson’s and similar conditions, and other Parkinson’s management guidelines
  2. Talk to people with Parkinson’s, carers, health and care professionals about experiences and goals for Parkinson’s care and self-care
  3. Bring together the expertise of health and care practitioners, people with Parkinson’s and carers to jointly design a self-management toolkit and a training programme for professionals
  4. Test the practicality and acceptability of the toolkit, making any necessary adjustments
  5. Conduct a large study (clinical trial) to test the positive impact and cost effectiveness if adopted by the NHS and its partners
  6. Identify the resources needed to enable this approach to be rolled out across the NHS, if effective

• REC name

  London - Queen Square Research Ethics Committee

• REC reference

  18/LO/1470

• Date of REC Opinion

  31 Oct 2018

• REC opinion

  Further Information Favourable Opinion