Objective: To assess the burden of uncertainties, hopes, and fears of people with Parkinson disease (PwP).

Background: Parkinson disease (PD) is associated with significant psychosocial burden and disease-related anxiety. However, the impact of patients’ uncertainties, hopes, and fears regarding their prognosis and the long-term effects of the disease is not well understood.

Method: This was a multi-phase, mixed-methods project. In Phase 1, semi-structured interviews were conducted with 20 people with PD (PwP) recruited through community partnerships within the Michael J. Fox Foundation. Participants were asked about existing and anticipated PD symptoms, as well as their concerns about their future. Seven themes were identified from these interviews: quality of life, disease progression, healthcare needs, relationships and social networks, financial responsibilities (including employment), stigma and self-perception, and specific symptoms. In Phase 2, a survey developed from these themes was pre-tested with ten PwP. In phase 3, the revised survey was deployed to participants in Fox Insight, a web-based longitudinal study.

Results: Between February 4 and March 3, 2025, 2602 individuals accessed the survey in Fox Insight. Ten who did not report a PD diagnosis were excluded, leaving 2592 responses for this analysis. Respondents had a mean age of 69.4 years (standard deviation 8.8) and were equally split between men (49.3%) and women (49.1%). Compared to all Fox Insight participants, responders to this survey were more likely to report a history of depression (X2=10.96, p<0.001) or anxiety (X2=7.95, p=0.004). Top concerns about the future included cognitive impairment (62.2%), loss of independence (57.3%) and loss of mobility (54.5%). Fewer than half of respondents reported sharing their concerns with a healthcare professional (35.5% with their PD specialist, 12.7% with other professionals).

Conclusion: Uncertainty about the future is common among PwP but is under-recognized among clinicians. Although relatively few respondents reported sharing these concerns with their healthcare team, the robust response to this optional survey suggests that uncertainty about the future is highly salient to PwP, particularly those with pre-existing mood disorders. Further analysis of demographic subgroups is ongoing and will inform recommendations for clinicians around anticipatory guidance for PwP.

« Back to 2025 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/exploring-uncertainties-and-fears-of-people-with-parkinson-disease/