目的 探索主流在线平台帕金森病患者的健康信息需求,为护理人员开展针对性健康信息服务提供依据。方法 抓取4个主流在线平台的帕金森病交流文本,应用Python软件和双词主题模型（Biterm Topic Model,BTM）,挖掘帕金森病患者健康信息需求并进行主题划分,使用Gephi软件绘制各主题的关键词共现图。结果 各主流在线平台的主题分析显示：知乎、贴吧、小红书、好大夫平台分别析出3、4、5、5个主题;对上述4个平台汇总的32 852条文本进行分析,析出6类帕金森病健康信息需求：症状管理（“睡眠-疼痛-乏力”症状群加重疾病负担）、药物治疗（存在错误用药认知及不规范调药行为）、居家管理（饮食与运动管理缺乏可操作性指导）、家属照护（替代搜寻存在信息简化与报告失真风险）、手术治疗（术前适应证评估与术后药物-程控协同不明确）、疾病诊断（基层难以确诊患者在线求助专家）。结论 帕金森病患者的健康信息需求以内容多维性和“患者-家属”双主体为特征,为护士实施多方联动、精准全面的健康信息服务提供新的证据支持。
Abstract
Objective To explore the health information needs of patients with Parkinson's disease (PD) across mainstream online platforms, and provide evidence for healthcare professionals to deliver targeted health information services. Methods The texts delivered by patients with PD were obtained by crawler across 4 mainstream online platforms. Python and Biterm Topic Model (BTM) were utilized to mine the health information needs and categorize the topics. Gephi software was employed to generate keyword co-occurrence networks for each topic. Results Topic analysis across mainstream online platforms including Zhihu, Tieba, Xiaohongshu, and Haodaifu identified 3, 4, 5, and 5 topics respectively. Analysis of 32,852 texts from these four platforms yielded the following six categories of health information needs among patients with PD: symptom management (aggravated disease burden due to the "sleep-pain-fatigue" symptom cluster), medication therapy (misconceptions about medication use and non-standardized medication adjustment behaviors), home management (lack of guidance for diet and exercise management), family caregiving (risks of information simplification and reporting distortion in surrogate searching), surgical treatment (unclear preoperative evaluation of indications and postoperative drug-programming coordination), and disease diagnosis (patients seeking online experts due to difficulty in obtaining a definitive diagnosis at the primary care level). Conclusion The health information needs of patients with PD are characterized by multidimensional content and a “patient-family” dual-subject framework, which provides new evidence to support nurses in implementing collaborative, targeted, and comprehensive health information services.
关键词
帕金森病 /
健康信息需求 /
网络爬虫 /
双词主题模型 /
主流在线平台
Key words
Parkinson's disease /
health information need /
web crawler /
biterm topic model /
mainstream online platforms
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基金
2024年度院长基金项目（yzjj2024hlgj02）
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