Objective: To characterize decision dynamics between patients with Parkinson’s disease (PwP) and their care partners (CP) on initiation of advanced therapies.

Background: Factors guiding decisions to initiate advanced therapies for Parkinson’s disease (PD) are not well studied.

Method: In a US cross-sectional study, 20 PwP with moderate-stage disease and their CP (N=40) were recruited via the Parkinson’s and Movement Disorders Alliance from February to July 2025. Separate interviews of PwP and CP within each dyad examined their perceptions of the CP role, factors influencing advanced therapy decisions, and approaches to resolve different perspectives.

Results: Participant characteristics: Median (interquartile range) age of participants was 63 (58–72) years, 58% were female, 88% were White, and median time since PD diagnosis was 6 (5–10) years. CP provided a median of 7 (4–15) hours’ weekly care.

Perception of CP role: PwP more often viewed CP as shared decision-makers (PwP: 40%, CP: 30%), while CP more often viewed themselves as advisors (PwP: 20%, CP: 45%) or observers (PwP: 5%, CP: 25%).

Factors influencing advanced therapy decisions: PwP–CP dyads showed strong concordance on major factors driving advanced therapy decisions, such as disease progression, treatment risks, levodopa use, and financial issues [Figures 1 and 2]. Divergence emerged (PwP–CP agreement <0.55) in reasons underlying the value attributed to factors such as need for surgery, others’ treatment experiences, administration burden, and life events [Figure 3]. More PwP wanted to avoid surgery and valued knowing about peers’ positive experiences with treatment, whereas more CP were less willing to adopt a treatment if it implied greater burden [Figure 3].

Resolving different perspectives: PwP and CP reported addressing differences by talking to each other (PwP: 55%, CP: 50%), with the final decision made by the PwP (PwP: 50%, CP: 35%), at times after further internal deliberation and self-research.

Conclusion: While PwP and CP share similar views on factors influencing advanced therapy decisions, this study reveals areas of divergent reasons which may impact shared decision-making, and the collaborative approach taken. Understanding these dynamics may improve patient-centered care and enhance engagement in decisions regarding advanced therapies for PD.

Figure 1

Figure 2

Figure 3

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MDS Abstracts - https://www.mdsabstracts.org/abstract/two-voices-one-disease-patient-and-care-partner-decision-dynamics-on-advanced-therapies-for-parkinsons-disease/