Receiving a diagnosis of Parkinson’s disease (PD) can bring up several uncomfortable questions. What does this mean for me and my family? How long can I keep working and enjoying my hobbies? Will other people view me differently? These fears and uncertainties can be a chronic source of anxiety for people with PD, yet clinicians are rarely trained to recognize them. If fears or worries are mentioned in the clinical visit, they may be misinterpreted or mislabeled, or sometimes ignored completely. Our research team aims to change that, using expert consensus and machine learning to highlight the worries of people with PD—in their own words.

Our team consists of data scientists, movement disorders neurologists, mental health specialists, and people with PD. Together, we queried the Fox Insight database—an online project of The Michael J. Fox Foundation for Parkinson’s Research—for responses to the Patient Report of Problems (PROP). This short questionnaire asks people with PD two important questions:

(1)  What is your most bothersome problem related to Parkinson’s disease?
(2)  How does this problem impact your daily functioning?

Participants can report up to five bothersome problems at a time. All told, the database contains over 25,000 responses from people with PD, making it one of the largest natural language sources of PD-related experiences.

For this project, we looked at a sample of 300 responses that mentioned phrases like “afraid of” or “worried about,” among others. The primary curation team classified these responses into different categories of fears. Some categories, like fear of falling or fear of dementia, were pre-determined based on the experience of the physicians and people with PD on the team, but other categories emerged naturally from the responses themselves. This approach to qualitative data, called grounded theory methods, is a unique way to capture the richness and variety of responses, without being limited to pre-conceived notions of fear and uncertainty.

Through iterative coding, we identified 26 categories of fear, ranging from the impact on relationships with friends and family, to the financial burden of PD, to the existential fear of the future/fear of the unknown. This last category, which can be so troubling to people with PD, has never been reported in the medical literature before. Our study was published in the Journal of Parkinson’s Disease in April 2024.

What’s next? Our team recognizes that brief online responses may not be representative of everything a person with PD might experience. In particular, the experiences of people who are diagnosed in their 30s and 40s may differ from the experiences of people who are diagnosed in their 50s and 60s; the experiences of women may differ from those of men. We are now recruiting for a series of telephone/video interviews of people with PD, in order to better understand the impact of social and demographic factors on fears and uncertainties. Ultimately we hope to provide educational materials to clinicians so they can better recognize the worries their patients may carry, and therefore be better equipped to address them.

Sneha Mantri, MD MS she is an Associate Professor of Neurology Fellowship Director, Movement Disorders Vice Chief for Clinical Operations at Duke University Movement Disorders Center and the Director of Medical Humanities and the Armstrong Humanities Scholars Program Trent Center for Bioethics, Humanities, and History of Medicine. She was an abstract presenter at the WPC 2023 in Barcelona.

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®