Qian Yiwei, Zhang Yi, He Xiaoqin, Xu Shaoqing, Yang Xiaodong, Mo Chengjun, Lu Xiaomeng, Qiu Mengjuan, Xiao Qin
Department of Neurology, Ruijin Hospital, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
Department of Digital, Huimei Digital Tech (Beijing) Co., Ltd, Beijing, China.
Front Psychiatry. 2021 Feb 2;12:615743. doi: 10.3389/fpsyt.2021.615743. eCollection 2021.
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 ( = 54,983), choice of pharmaceutical drugs ( = 45,203) and non-motor symptoms ( = 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.
社交媒体倾听(SML)是一种从社交媒体平台获取信息以深入了解用户体验的新方法,已被用于分析关于多种疾病的讨论。为了了解帕金森病患者未满足的需求并优化医患沟通,开展了社交媒体倾听以调查中国患者的相关问题。使用定义的帕金森病相关术语,对2005年1月至2019年4月在中国内地发布的具有中文内容的公开可用社交媒体平台进行了全面搜索。在进行了多步机器筛选后,得出了一系列帖子。对内容进行人工总结和分类,以分析和梳理心理见解,并应用描述性统计来汇总研究结果。总共101,899条与患者相关的帖子构成了本研究的基础。主题主要集中在运动症状(=54,983)、药物选择(=45,203)和非运动症状(=44,855)。提及最多的症状是震颤(54.5%)、疼痛(22.9%)和僵硬(22.1%)。心理负担(51%)和工作/社会负担(48%)是患者及其家属最关心的负担。复方左旋多巴(43%)和多巴胺激动剂(23%)是患者最常用的选择,同时对新一代抗帕金森病药物的担忧有所增加。患者画像显示不同时期具有不同特征,提倡医生提供个性化服务。在患者管理中,必须制定个性化治疗和教育策略以及社会支持策略。