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

Corresponding author: liangjuanfang, juanfangliang@126.com

DOI: 10.12201/bmr.202509.00066

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  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

  Submit time: 29 September 2025

  Copyright: The copyright holder for this preprint is the author/funder, who has granted biomedRxiv a license to display the preprint in perpetuity.
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