Institute of Computer Science, University of Tartu, Tartu, Estonia.
Department of Obstetrics and Gynecology, Institute of Clinical Medicine, University of Tartu, Tartu, Estonia.
J Med Internet Res. 2023 Aug 15;25:e45381. doi: 10.2196/45381.
Endometriosis is a debilitating and difficult-to-diagnose gynecological disease. Owing to limited information and awareness, women often rely on social media platforms as a support system to engage in discussions regarding their disease-related concerns.
This study aimed to apply computational techniques to social media posts to identify discussion topics about endometriosis and to identify themes that require more attention from health care professionals and researchers. We also aimed to explore whether, amid the challenging nature of the disease, there are themes within the endometriosis community that gather posts with positive sentiments.
We retrospectively extracted posts from the subreddits r/Endo and r/endometriosis from January 2011 to April 2022. We analyzed 45,693 Reddit posts using sentiment analysis and topic modeling-based methods in machine learning.
Since 2011, the number of posts and comments has increased steadily. The posts were categorized into 11 categories, and the highest number of posts were related to either asking for information (Question); sharing the experiences (Rant/Vent); or diagnosing and treating endometriosis, especially surgery (Surgery related). Sentiment analysis revealed that 92.09% (42,077/45,693) of posts were associated with negative sentiments, only 2.3% (1053/45,693) expressed positive feelings, and there were no categories with more positive than negative posts. Topic modeling revealed 27 major topics, and the most popular topics were Surgery, Questions/Advice, Diagnosis, and Pain. The Survey/Research topic, which brought together most research-related posts, was the last in terms of posts.
Our study shows that posts on social media platforms can provide insights into the concerns of women with endometriosis symptoms. The analysis of the posts confirmed that women with endometriosis have to face negative emotions and pain daily. The large number of posts related to asking questions shows that women do not receive sufficient information from physicians and need community support to cope with the disease. Health care professionals should pay more attention to the symptoms and diagnosis of endometriosis, discuss these topics with patients to reduce their dissatisfaction with doctors, and contribute more to the overall well-being of women with endometriosis. Researchers should also become more involved in social media and share new science-based knowledge regarding endometriosis.
子宫内膜异位症是一种使人虚弱且难以诊断的妇科疾病。由于信息和意识有限，女性通常依赖社交媒体平台作为支持系统，以就与疾病相关的问题进行讨论。
本研究旨在应用计算技术对社交媒体帖子进行分析，以确定关于子宫内膜异位症的讨论主题，并确定需要医疗保健专业人员和研究人员更多关注的主题。我们还旨在探讨在这种疾病的挑战性性质下，是否存在子宫内膜异位症社区内聚集具有积极情绪的帖子的主题。
我们从 2011 年 1 月至 2022 年 4 月，从 r/Endo 和 r/endometriosis 子版块中回顾性提取帖子。我们使用机器学习中的情感分析和基于主题建模的方法对 45693 个 Reddit 帖子进行了分析。
自 2011 年以来，帖子和评论的数量稳步增加。帖子被分为 11 类，数量最多的帖子涉及信息询问（Question）、分享经验（Rant/Vent）或诊断和治疗子宫内膜异位症，尤其是手术（Surgery related）。情感分析显示，92.09%（42077/45693）的帖子与负面情绪相关，只有 2.3%（1053/45693）表达了积极的情绪，并且没有一个类别的正面帖子多于负面帖子。主题建模揭示了 27 个主要主题，最受欢迎的主题是手术（Surgery）、问题/建议（Questions/Advice）、诊断（Diagnosis）和疼痛（Pain）。汇集了大多数研究相关帖子的调查/研究（Survey/Research）主题，帖子数量最少。
我们的研究表明，社交媒体平台上的帖子可以深入了解有子宫内膜异位症症状的女性的关注点。对帖子的分析证实，患有子宫内膜异位症的女性每天都要面对负面情绪和疼痛。大量与提问相关的帖子表明，女性没有从医生那里获得足够的信息，需要社区支持来应对疾病。医疗保健专业人员应该更加关注子宫内膜异位症的症状和诊断，与患者讨论这些话题，以减少她们对医生的不满，并为患有子宫内膜异位症的女性的整体健康做出更多贡献。研究人员还应该更多地参与社交媒体，并分享有关子宫内膜异位症的基于新科学的知识。
