Objective: To understand Parkinson’s disease (PD) patients’ unmet needs and optimize the communication strategy with them, we used social media listening (SML) to focus on the concerns in patients with PD and its impact on quality of life.

Background: Social media platforms provide a window to patients’ perceptions of their diseases, satisfaction with outcomes, and other factors affecting quality of lives. SML is a new process to obtain information from social media platforms and generate insights into users’ experiences, which has been employed to analyze discussions in a multitude of diseases.

Method: A comprehensive search on social media platforms was performed for publicly available, Chinese-language content posted between June to November 2019 using defined PD-related terms. After multiple steps of machine screening using a mixed method of natural language processing (NLP), traditional keyword analysis, a series of corpus sets were derived for different PD-related records. The content was manually summarized and classified to analyze and map psychological insights with descriptive statistics applied on aggregated findings.

Results: In all, 115,901 possible patient records were identified, resulting in a total of 101,899 corpus which formed the basis of this study. Topics from PD patients mainly focused on motor symptoms (73.9%), while for nonmotor symptoms were 65.1%. Most common symptoms mentioned were tremor (54.48%), pain (22.85%) and rigidity (22.14%). The negative emotional intensity of non-motor symptoms (97%) is much greater than the negative emotional intensity of motor symptoms (68%). With the development of PD, the proportion of positive emotions was increasing, but the negative emotions of patients were always more than the positive emotions. Of the pharmaceutical drugs, levodopa (92.7%) and dopamine receptor agonist (61.9%) were the most common options. Patients concerned more about both the non-motor symptoms which could not be solved and the motor complication caused by levodopa. Psychological burden (51%) and work/social burden (48%) were the most concerned burden for PD patients and their families.

Conclusion: Insights revealed using SML strengthen our understanding about patient experiences and their unmet needs in PD. It is imperative to plan individualized support and education strategies to the management of the PD patients.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/concerns-in-patients-with-parkinsons-disease-in-china-a-content-analysis-of-data-from-social-listening/