What symptoms matter most to people with Parkinson’s?
We share the findings and key takeaways from a survey of over 700 people living with Parkinson’s.
Parkinson’s UK worked with people affected by the condition to design a simple survey to find out what aspects of Parkinson’s people with the condition most want to see improved through treatment.
The survey was shared with the charity’s Research Support Network — a community of people affected by Parkinson’s who are driving research forward.
Survey respondents were asked to list up to 3 symptoms or side effects of Parkinson’s that troubled them most.
The results — published in the Journal of Parkinson’s Disease — powerfully highlight the breadth and depth of symptoms and challenges that people with Parkinson’s deal with on a daily basis.
790 people took part and between them reported 2,295 symptoms or side effects linked to Parkinson’s.
To analyse this huge amount of information, Parkinson’s UK recruited a steering group of Patient and Public Involvement volunteers all with direct experience of living with Parkinson’s to help interpret the data.
Together they helped to group the survey responses into 24 categories. Of these, 59% were motor symptoms, 37% were non-motor issues and 3% were problems related to medication.
When the team explored the findings in more detail they found that some symptoms were reported less frequently by those who’d lived with the condition for longer, while others were mentioned more frequently with disease duration.
Tremor is a major concern for many people
In the survey, tremor was by far and away the most frequently reported issue with 238 mentions.
Tremor is probably the most visible and well recognised symptom of Parkinson’s. However, despite it being a central feature for many people with the condition, it remains one of the most difficult symptoms to treat.
Interestingly, the results from the survey show that tremor is most frequently reported as a key problem by people who’ve lived with the condition for 2 years or less, and is then reported less frequently the longer people have lived with the condition. This may be because other symptoms emerge and become more troublesome as the condition progresses.
We still urgently need better therapies to manage tremor.
Non-motor symptoms are important right from the start
Non-motor symptoms refer to the problems unrelated to movement that Parkinson’s can bring. While this ‘non motor’ side of the condition can be less visible than motor symptoms such as tremor and slow or stiff movement, these features can be just as debilitating.
The survey results show that people diagnosed for 2 years or less frequently reported problems with psychological health, fatigue, cognitive function and pain.
More focus on non-motor symptoms is needed from the point of diagnosis to improve treatments and care for people with the condition.
Movement issues become more important as the condition progresses
Problems with walking, balance and falls, speech problems, freezing and dyskinesia become increasingly important as the condition progresses.
In those who’ve lived with Parkinson’s for 11 years or longer, balance and falls rises to become the most frequently mentioned problem, followed by difficulties with walking and speech.
Improved treatments and management strategies for advanced Parkinson’s are urgently needed to help maintain independence and quality of life.
Priorities are diverse, personal and may change over time
Overall, this study emphasises the importance of the thorough and ongoing assessment of symptoms throughout the development of the condition.
Every person with Parkinson’s experiences the condition differently and their own personal priorities for improving life must be at the centre of their care.
We also need to make sure that what matters to patients is at the heart of research to develop better treatments, management strategies and care. This means involving people with Parkinson’s at every stage of the research process.
The development of new treatments and the way that we test them in clinical trials must focus on what’s important to patients.
Special thanks to the volunteers who gave their time and insights to support this piece of work, and to everyone who shared their experiences in the survey. Thanks also to Dr Ian Harrison at UCL who provided invaluable support with producing the figures and the statistical analysis for the paper.
Help put patients at the heart of Parkinson’s research
If you have Parkinson’s or are a partner, carer or family member of someone who does you can make a difference by bringing your experiences to research. Join our Research Support Network and we’ll send you opportunities to take part and have your say in research.
If you’re a researcher then you have a vital role to play too. Whatever stage your research, whether you’re lab-based, in the clinic or in industry we can help connect you to people living with Parkinson’s to inform and shape your research. Find out more about how we can work together.