Survey

Background: People with Parkinson’s (PwP) can experience both physical and psychological symptoms, and understanding the perspectives of people affected is crucial for improved management, clinical outcomes and quality of life.

Objectives: This online survey aimed to examine whether people affected by Parkinson’s perceive an interaction between physical and psychological symptoms, and consider the influence of individuals role and previous symptom experience on their perception.

Methods: A UK-wide survey of 251 PwP and 61 family/carers was conducted. The survey focused on the reported formal diagnosis of psychological symptoms and symptoms experienced without formal diagnosis, onset and perceived impact of physical/psychological symptoms on one another. Responses were summarised using descriptive statistics.

Results: A substantial proportion of respondents reported a formal diagnosis of psychological condition(s) (38.5%) or symptoms without formal diagnosis (44.6%), with anxiety and depression most common. Respondents overwhelmingly reporting the perception of a bi-directional relationship between physical and psychological symptoms, with this perception appearing to be influenced by previous experience of psychological symptoms and individual role.

Conclusions: PwP and carers appear to appreciate a link between physical and psychological symptoms in Parkinson’s, but report an under-recognition of psychological symptoms experienced, with psychological symptoms commonly preceding formal diagnosis of Parkinson’s. Efforts should be made to improve symptom recognition and optimise signposting to appropriate services. Enhancing the assessment of psychological symptoms and optimising onward referrals is essential to improve care for PwP. Further objective research may help to identify potential sub-groups and allow the prediction of changes in physical function and psychological symptoms.