Appraising Unmet Needs and Misinformation Spread About Polycystic Ovary Syndrome in 85,872 YouTube Comments Over 12 Years: Big Data Infodemiology Study (Preprint)

Abstract

Polycystic ovary syndrome (PCOS) is the most common endocrinopathy in women, resulting in substantial burden related to metabolic, reproductive, and psychological complications. While attempts have been made to understand the themes and sentiments of the public regarding PCOS at the local and regional levels, no study has explored worldwide views, mainly due to financial and logistical limitations. YouTube is one of the largest sources of health-related information, where many visitors share their views as questions or comments. These can be used as a surrogate to understand the public’s perceptions.

We analyzed the comments of all videos related to PCOS published on YouTube from May 2011 to April 2023 and identified trends over time in the comments, their context, associated themes, gender-based differences, and underlying sentiments.

After extracting all the comments using the YouTube application programming interface, we contextually studied the keywords and analyzed gender differences using the Benjamini-Hochberg procedure. We applied a multidimensional approach to analyzing the content via association mining using Mozdeh. We performed network analysis to study associated themes using the Fruchterman-Reingold algorithm and then manually screened the comments for content analysis. The sentiments associated with YouTube comments were analyzed using SentiStrength.

A total of 85,872 comments from 940 PCOS videos on YouTube were extracted. We identified a specific gender for 13,106 comments. Of these, 1506 were matched to male users (11.5%), and 11,601 comments to female users (88.5%). Keywords including diagnosing PCOS, symptoms of PCOS, pills for PCOS (medication), and pregnancy were significantly associated with female users. Keywords such as herbal treatment, natural treatment, curing PCOS, and online searches were significantly associated with male users. The key themes associated with female users were symptoms of PCOS, positive personal experiences (themes such as <i>helpful</i> and <i>love</i>), negative personal experiences (<i>fatigue</i> and <i>pain</i>), motherhood (<i>infertility</i> and <i>trying to conceive</i>), self-diagnosis, and use of professional terminology detailing their journey. The key themes associated with male users were misinformation regarding the “cure” for PCOS, using natural and herbal remedies to cure PCOS, fake testimonies from spammers selling their courses and consultations, finding treatment for PCOS, and sharing perspectives of female family members. The overall average positive sentiment was 1.6651 (95% CI 1.6593-1.6709), and the average negative sentiment was 1.4742 (95% CI 1.4683-1.4802) with a net positive difference of 0.1909.

There may be a disparity in views on PCOS between women and men, with the latter associated with non–evidence-based approaches and misinformation. The improving sentiment noticed with YouTube comments may reflect better health care services. Prioritizing and promoting evidence-based care and disseminating pragmatic online coverage is warranted to improve public sentiment and limit misinformation spread.