Supporting people with Parkinson’s prognosis and care planning (v1)
Research type
Research Study
Full title
Understanding and supporting patients, carers and clinicians with personalised prognostic information for Parkinson’s disease: a qualitative study and development of a toolkit of resources
IRAS ID
339841
Contact name
Elisabeth Grey
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
1 years, 5 months, 28 days
Research summary
Parkinson’s is a condition that affects the body’s nervous system, which can lead to many problems such as difficulty walking, poor balance or dementia. It gets worse over time and is very variable. This makes it hard to accurately predict how a person’s Parkinson’s will progress (i.e., provide a prognosis). However, research data now allows us to identify groups of people with Parkinson’s (PwP) who are more or less likely to develop certain symptoms – this prognostic information could be used in clinical practice to help people plan their future. Researchers have also developed ‘prognostic models’, which aim to predict how a person’s Parkinson’s is likely to progress over time based on their current symptoms and characteristics; these will be ready to use in clinical practice soon.
Having accurate, personalised information could help people to make care plans. However, we know that people with Parkinson’s, their families and clinicians find it hard to talk about a prognosis and what care the person might need in future.
This research aims to develop a set of resources for PwP, carers and clinicians to support the appropriate use of personalised prognostic information and subsequent care planning.
We will hold 8-10 focus groups with PwP, carers and clinicians to understand their preferences, concerns and needs regarding the use of prognostic information and how this may affect care planning. We will recruit participants from across the UK, working with hospitals, community groups and Parkinson’s UK to reach a wide range of people. The findings will guide the development of tools and resources for PwP, carers and clinicians, which may include information leaflets and webpages, videos, decision tools and training programmes. The resources will be tested and reviewed by PwP, carers and clinicians in several stages; we will use their feedback each time to improve the resources.REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
25/PR/0879
Date of REC Opinion
14 Aug 2025
REC opinion
Further Information Favourable Opinion