National Institutes of Health/NICHD, Bethesda, Maryland, United States.
National Institutes of Health/NICHD, Bethesda, Maryland, United States.
J Pediatr Adolesc Gynecol. 2024 Apr;37(2):142-148. doi: 10.1016/j.jpag.2023.10.007. Epub 2023 Nov 20.
Polycystic ovarian syndrome (PCOS) is commonly diagnosed in adolescence, and information about the condition is often shared online. We aimed to assess the extent, content, and engagement of PCOS-related information across social media platforms.
We performed a cross-sectional content analysis of PCOS-related posts on TikTok, Instagram, and Reddit. Top PCOS posts were collected from TikTok and Instagram (N = 100). Two researchers independently coded all posts using a codebook including symptoms, interventions, and qualities. Logistic regression assessed the relationship between user engagement and creator conflicts of interest. On Reddit, posts from 2020 to 2022 (N = 34,208) were collected. Topic modeling using latent Dirichlet allocation and non-negative matrix factorization (NMF) was applied to discover topics in the textual data.
PCOS content received high engagement across all platforms, with an average of 1.8 million views on TikTok. "Weight" and "Diet" were the most frequently mentioned topics on TikTok and Instagram, and interactions with medical providers were discussed in 30% of posts. A financial conflict of interest was present in 45% of TikTok posts and 89% of Instagram posts. NMF identified 15 coherent topics, including symptoms, interventions, interactions with the medical system, and information-seeking. Reddit posts under "Symptom Management" received the most comments.
PCOS content is present and pervasive across social media platforms, suggesting the ability of information from non-clinician sources to reach and engage with a large population using novel modes of health information sharing. Further studies of this content will allow for a deeper understanding of patient perceptions, misconceptions, and knowledge of PCOS, with the potential to inform patient-centered counseling.
多囊卵巢综合征（PCOS）在青春期常见，且相关信息常在线上分享。我们旨在评估社交媒体平台上 PCOS 相关信息的范围、内容和参与度。
我们对 TikTok、Instagram 和 Reddit 上的 PCOS 相关帖子进行了横断面内容分析。从 TikTok 和 Instagram 中收集了排名靠前的 PCOS 帖子（N=100）。两位研究人员使用包括症状、干预措施和质量在内的编码手册对所有帖子进行了独立编码。逻辑回归评估了用户参与度与创作者利益冲突之间的关系。在 Reddit 上，从 2020 年到 2022 年（N=34208）收集了帖子。使用潜在狄利克雷分配和非负矩阵分解（NMF）的主题建模应用于发现文本数据中的主题。
PCOS 内容在所有平台上都获得了高度的参与，TikTok 上的平均浏览量为 180 万次。TikTok 和 Instagram 上最常提到的话题是“体重”和“饮食”，30%的帖子讨论了与医疗提供者的互动。45%的 TikTok 帖子和 89%的 Instagram 帖子存在财务利益冲突。NMF 确定了 15 个连贯的主题，包括症状、干预措施、与医疗系统的互动以及信息搜索。Reddit 上“症状管理”下的帖子收到的评论最多。
PCOS 内容在社交媒体平台上广泛存在，这表明非临床来源的信息能够通过新颖的健康信息共享模式触达并吸引大量人群。对这些内容的进一步研究将使我们能够更深入地了解患者对 PCOS 的认知、误解和知识，并有潜力为以患者为中心的咨询提供信息。
