Objective: To understand the perceptions and knowledge that people with Parkinson’s disease (PD) have about their treatment, available options for advanced PD, and to determine the type and timing of information they receive about available therapies.

Background: The European Parkinson’s Disease Association (EPDA) is a voice for the Parkinson’s community in Europe. In March 2021, the EPDA launched an online survey focused on advanced Parkinson’s to gauge people’s experience of treatment, understanding of options that could be considered for advanced PD, and whether timely and adequate information about advanced PD therapies is provided by healthcare professionals.

Method: The survey was published on the EPDA’s website in English, Dutch, French, German, Spanish, Hungarian, Romanian and Slovenian, and was intended to take no more than 15 minutes to complete. Participants were asked about their PD history, experience of PD and its treatment, satisfaction with treatment, and PD information sources.

Results: From 31 March 2021 to 31 Jan 2022 a total of 1,063 participants from 53 countries completed the survey. A high proportion of respondents were taking frequent oral medication doses (Figure 1): 63.9% (412/645) ≥4 times per day; 36.4% (235/645) ≥5 times per day. Only 12.8% (136/1,063) were receiving device-aided therapies (DATs). Of those taking oral medications, 66.1% (419/634) experienced variations in medication effect (Figure 2). 60.1% (252/419) of these said these variations were regularly or often due to wearing off of effect before the next oral dose; 40.3% (169/419) said they were regularly or often due to a delay in onset of effect, suggesting possible gastrointestinal issues. Dyskinesia only occurred often in 25.1% (106/419) of this subgroup. Subjects receiving DATs reported higher rates of satisfaction with treatment than those taking oral therapy. 46.6% (382/819) of respondents had not had a discussion with a healthcare professional (HCP) about advanced PD and many sought information from other sources.

Conclusion: The survey results suggest that around two-thirds of PD patients face challenges with oral treatment, and that there are gaps in how information about advanced Parkinson’s is communicated by HCPs to patients. These insights will help inform EPDA’s efforts to support the Parkinson’s community with timely information about treatment options.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/parkinsons-patient-insights-knowledge-and-experience-of-treatment-results-from-a-multicountry-survey/