Objective: Identify factors affecting PwPD and CP communications with HCPs regarding dyskinesia and OFF episodes.

Background: Managing Parkinson Disease (PD) requires clear and open communication between Healthcare Providers (HCP), People with Parkinson Disease (PwPD) and their Care Partners (CP). The Parkinson Disease and Movement Disorder (PMD) Alliance, a U.S-based advocacy organization, provides education and support to the PD community.[1]

Method: PMD Alliance online survey, fielded 20Nov2021-20Dec2021, evaluating PwPD/CP self-perceived knowledge of PD and PD medications, presence of motor fluctuations and dyskinesia, and communication with HCPs about these symptoms. CPs answered demographic questions relative to the PwPD and communication questions based on their own/observed experiences.

Results: Of 562 survey completers 440 (78%) were PwPD and 122 (22%) were CP. PwPD modal age was 61-70 years (39%); most had PD ≥5 years (69%) and took PD medications 4 or more times daily (67%). Most (82%) experienced OFF episodes at least occasionally (39% daily). Half (50%) experienced occasional dyskinesia (19% daily), and 28% said they had delayed starting, or avoided increasing medications because of dyskinesia or fear of developing it. Still, 72% believed PD was well-controlled by current medications. Overall, respondents perceived themselves as well-informed about PD and medication effects on motor symptoms. Most, (78%), did not find it difficult to describe symptoms or their bothersome nature to HCPs. Although 72% said discussions about OFF episodes and dyskinesia took place on most, or all HCP visits; 78% cited one or more challenges in having these discussions. Challenges most commonly included not wanting to take more medication, not remembering what they want to discuss with the HCP, or difficulty describing symptoms. CPs additionally cited the PwPD wanting their HCP to think they were doing well, and the CP having difficulty discussing symptoms with the HCP while the PwPD was present.

Conclusion: PwPD and CP members of the PMD Alliance generally feel comfortable discussing PD symptoms and medications with HCPs. However, communication challenges such as medication number and complexity, difficulty remembering topics for discussion, and to a certain extent, difficulty describing symptoms (PwPD) or willingness to discuss topics in front of the PwPD (CP) deserve further exploration.

References: 1. Giordano-Farmer J, Bixby M, Brillman S, et al. Evaluating the impact of levodopa-induced dyskinesia and OFF time in persons affected by Parkinson’s disease: Results of a PMD alliance survey. Presented at 2021 American Academy of Neurology Annual Meeting; April 17-22. Abstract P14 148. Neurology, April 13, 2021; 96 (15 Supplement).

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-complexity-of-parkinson-disease-medication-regimens-may-factor-into-treatment-decisions-results-of-a-pmd-alliance-survey/