Office of Medical Policy, Center for Drug Evaluation and Research, Food and Drug Administration, Silver Spring, Maryland, USA.
Office of Surveillance and Epidemiology, Center for Drug Evaluation and Research, Food and Drug Administration, Silver Spring, Maryland, USA.
Pharmacoepidemiol Drug Saf. 2023 Mar;32(3):341-351. doi: 10.1002/pds.5564. Epub 2022 Nov 11.
Patients use social media forums to discuss their medical history and healthcare experiences, providing early insight into real-world patient experiences. We analyzed COVID-19 patient experiences from Reddit social media posts.
We extracted Reddit Application Programming Interface data for the subreddit/COVID-19 positive from March to August 2020 and selected users tagged as "Tested Positive" or "Tested Positive- Me" flair and who posted at least thirty times in any calendar month, excluding users who explicitly stated location outside of the U.S. For tested-positive patients (users), we created and reviewed individual case profiles summarizing their COVID-19 symptoms, testing, and medications or treatments. Data were imported to Nvivo qualitative analysis software and qualitative coding was conducted.
There were 31 759 posts and comments from 720 users in March to May 2020 (Q1) and 40 446 posts and comments from 1649 users from June to August 2020 (Q2). Final count of "Tested Positive" was 1296 users (280 in Q1 and 1016 in Q2). Across both quarters, frequently reported symptoms included sore throat, headaches, fevers, or chills. Loss of sense of smell or taste were reported by users in early March, prior to the inclusion of this symptom to the CDC list in April and GI-related symptoms and fatigue were reported in the March to May data, before they were added as a COVID-19 associated symptom in July 2020. Users also reported in-depth descriptions of their symptoms, motivations for testing, and long-term impacts such as post-viral fatigue.
Social media data can potentially serve as an early surveillance data source in a pandemic and offer preliminary insights into patient disease experiences.
患者在社交媒体论坛上讨论他们的病史和医疗保健经验，从而提供对现实世界患者体验的早期洞察。我们分析了 Reddit 社交媒体上与 COVID-19 相关的患者体验。
我们从 2020 年 3 月至 8 月提取了 Reddit 应用程序接口数据，针对 subreddit/COVID-19 positive 选择标记为“Tested Positive”或“Tested Positive-Me”的用户，并选择至少在任何日历月内发布三十次以上的用户，不包括明确表示位置不在美国的用户。对于测试呈阳性的患者（用户），我们创建并审查了个人案例简介，总结了他们的 COVID-19 症状、检测结果以及药物或治疗方法。数据被导入到 Nvivo 定性分析软件中，并进行了定性编码。
在 2020 年 3 月至 5 月（第 1 季度），有 31759 个帖子和评论来自 720 名用户，而在 2020 年 6 月至 8 月（第 2 季度），有 40446 个帖子和评论来自 1649 名用户。最终的“Tested Positive”用户数为 1296 名（第 1 季度 280 名，第 2 季度 1016 名）。在两个季度中，经常报告的症状包括喉咙痛、头痛、发烧或发冷。嗅觉或味觉丧失在 3 月初被用户报告，早于该症状在 4 月被纳入 CDC 清单，而与 GI 相关的症状和疲劳在 3 月至 5 月的数据中被报告，早于该症状在 2020 年 7 月被添加为 COVID-19 相关症状。用户还报告了他们症状的详细描述、检测的动机以及病毒后疲劳等长期影响。
社交媒体数据有可能成为大流行期间的早期监测数据源，并提供对患者疾病体验的初步见解。
