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.

Parkinson’s disease affects the body’s nervous system, leading to problems such as difficulty walking, poor balance and dementia. It gets worse over time and each person’s experience of Parkinson’s will be different from another’s. For individual Parkinson’s patients, it’s therefore hard to come up with a ‘prognosis’ – an accurate prediction of how their disease will progress. However, research has helped identify groups of people with Parkinson’s who are more likely to develop certain symptoms. Researchers have also developed ‘prognostic’ models using data from hundreds of people with Parkinson’s. These models aim to predict how someone’s Parkinson’s will progress based on their symptoms and characteristics, such as age. These models should be available for use in clinics soon. Having accurate, personalised information could help people to make care plans. However, we know that it can be hard for people with Parkinson’s, their families and clinicians to talk about a prognosis and what care the person might need in future. We want to support better discussions about prognosis and future care for people with Parkinson’s. We want to develop a toolkit of resources to support these conversations. First, we will talk to people with Parkinson’s, carers and clinicians to understand their needs and concerns about prognosis and care planning. Then we will develop the toolkit. It might include information leaflets, webpages, videos, decision tools and training programmes. We will ask people with Parkinson’s, carers and clinicians to review the resources and use their feedback to improve the toolkit until it is ready to share. The toolkit will support people with Parkinson’s, their families and clinicians to talk about their prognosis and plan for future care. We are working with Parkinson’s UK, which will make the toolkit freely available.