Surveying Concerns about the Future in People with Parkinson’s Disease
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Background
People with Parkinson’s disease (PD) experience substantial psychosocial burden, but the extent of their concern about the future is not well characterized.
Objective
The objective of the present study is to characterize concerns about the future among people with PD (PwP), with an emphasis on the clinical and demographic correlates of future-oriented concerns.
Methods
A survey in the online Fox Insight study platform asked PwP to rate their degree of concern about the future across seven domains: quality of life, disease progression, healthcare needs, social relationships, financial responsibilities, stigma, and specific symptoms. Relationships among uncertainty and demographic and clinical features, such as age of onset, gender, and disease severity, were examined. Latent class analysis was conducted to identify patterns of fear/uncertainty.
Results
Among 3372 respondents, concerns about the future were common and spanned cognitive, functional, social, and symptom-related domains. Concerns about future cognitive impairment, independence, mobility, and disease progression were most prominent. Women and individuals with young-onset PD reported higher levels of concern than other groups. Latent class analysis revealed two clear patterns, including a high-concern subgroup with elevated worry across nearly all domains. Fewer than half of respondents had discussed these concerns with a healthcare professional.
Conclusion
Future-related concerns are common among people with PD but is not routinely explored in clinical care. Greater attention to these concerns, especially for young-onset individuals and women, may help clinicians offer more timely and supportive guidance.
Plain Language Summary
Many people with PD worry about their future, including uncertainty around cognition, independence, and disease progression. These concerns appear to be greatest in women and people with young-onset PD, yet few report discussing their concerns with their clinicians. Anticipatory guidance from clinicians about future-related worries may mitigate uncertainty-related psychosocial distress.
