Abstract
Social media listening (SML) is a new process for obtaining information from social media platforms to generate insights into users' experiences and has been used to analyze discussions about a multitude of diseases. To understand Parkinson's disease patients' unmet needs and optimize communication between doctors and patients, social media listening was performed to investigate concerns in Chinese patients. A comprehensive search of publicly available social media platforms with Chinese-language content posted between January 2005 and April 2019 in mainland China was performed using defined Parkinson's disease-related terms. After multiple steps of machine screening were performed, a series of posts were derived. The content was summarized and classified manually to analyze and map psychological insights, and descriptive statistics were applied to aggregate findings. A total of 101,899 patient-related posts formed the basis of this study. The topics mainly focused on motor symptoms (n = 54,983), choice of pharmaceutical drugs (n = 45,203) and non-motor symptoms (n = 44,855). The most common symptoms mentioned were tremor (54.5%), pain (22.9%), and rigidity (22.1%). Psychological burden (51%) and work/social burden (48%) were the most concerning burdens for patients and their families. The compound levodopa (43%) and dopamine agonists (23%) were the most common options for the patients, while concerns about new-generation anti-Parkinson's disease medication increased. The portraits of patients suggested varying characteristics across different periods and advocate for personalized service from doctors. In the management of patients, it is imperative to plan individualized therapy and education strategies as well as strategies for social support.
Highlights
Parkinson’s disease (PD) is the second most common neurodegenerative disease, ranking lower only than Alzheimer Parkinsons disease [1], and affects more than 10 million people worldwide
The aim of the current study was to perform a content analysis study based on Social media listening (SML) to provide insights into disease burden, diagnosis, treatment patterns and quality of life in Chinese patients with PD
Our research represents the first study on the usefulness of social networks in exploring issues related to Chinese patients with PD
Summary
Parkinson’s disease (PD) is the second most common neurodegenerative disease, ranking lower only than Alzheimer Parkinsons disease [1], and affects more than 10 million people worldwide. It is estimated that the number of Chinese patients with PD will increase to 4.94 million by 2030, accounting for half of PD patients worldwide [3] This disease has a relentless and progressive course that results in motor symptoms, including resting tremor, bradykinesia, limb rigidity, and gait and balance problems, and a series of non-motor manifestations, such as loss of SML in Chinese PD Patients olfaction, psychiatric symptoms, autonomic dysfunction (e.g., sexual dysfunction, gastrointestinal disorders, orthostatic hypotension), sleep disorders, mild cognitive impairment and dementia [4]. The Internet has transformed communication channels for people in general and patients in particular, with social media interactions including online forums, microblogs, social networks and content communities [6]. With the rapid development of the Internet and mobile apps in China, web-based consultations could serve as an effective communication tool in conventional physician-patient relationships and have already acted as a supplementary tool for traditional health care since 1999 [13]
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
