通讯作者: 梁娟芳, juanfangliang@126.com

DOI：10.12201/bmr.202509.00066

A Study on Health Needs of Patients with Rare Diseases Based on LDA: A Case Study of Hemophilia.

• 摘要：目的/意义 揭示血友病为代表的罕见病患者群体潜在健康需求。方法/过程 以百度“血友病吧”的用户发表的贴子文本为数据来源,采用LDA主题建模和情感分析方法,分析用户关注热点及情感倾向。结果/结论 获取有效贴子文本共9765条,根据LDA主题分析得到用户对血友病关注的七大主题(基因遗传、护理处置、症状表现、预防治疗、医保报销、药物可及、生活就业),按照用户健康需求内容,归纳为四大类(医疗防治、公共支持、医保报销、药物可及)。网络用户关于血友病相关问题态度不容乐观。建议强化诊疗能力建设、构建多维度社会支持网络、持续完善医药保障体系、加强用药管理,为血友病患者健康需求提供全方位保障。

  关键词： 文本挖掘; 情感分析; 罕见病; 血友病; 健康需求

   

  Abstract: ABSTRACT:Purpose /SignificanceTo uncover the potential healthcare needs of patient populations with rare diseases,exemplified by hemophilia.Method/ProcessLDA topic modeling and sentiment analysis methods were used to analyze the communication texts of Baidu Hemophilia Bar users on hemophilia topics, and to find out the main contents and attitudes of patients.Result /ConclusionA total of 9765 pieces of valid post texts were obtained. Based on LDA topic analysis, seven major themes of user concern regarding hemophilia were identified:genetic inheritance, nursing and management, symptomatic manifestations, preventive treatment, medical insurance reimbursement, drug accessibility, and life & employment. According to the content of health needs, these themes can be summarized into four categories: medical prevention and treatment, public support, medical insurance reimbursement, and drug accessibility. The attitudes of internet users towards issues related to hemophilia are not optimistic.It is recommended to strengthen the construction of diagnosis and treatment capacity for rare diseases, establish a multi-dimensional social support network, continuously improve the medical security system for rare diseases,strengthen medication management for rare diseases and offer a comprehensive range of healthcare services tailored to individuals afflicted with rare diseases.

  Key words: text mining; sentiment analysis; rare disease; hemophilia; health needs

  提交时间：2025-09-29

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• 序号	提交日期	编号	操作
  1	2025-06-26	10.12201/bmr.202509.00066V1	下载

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