Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: May 22, 2023
Date Accepted: Aug 23, 2023
Appraising the unmet needs and misinformation spread about PCOS: A big-data infodemiology study analysing 85,872 YouTube® comments over 12 years
ABSTRACT
Background:
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 local and regional level, there are no studies exploring the global views mainly due to financial and logistical limitations. YouTube® is one of the largest sources of health-related information where several visitors share their views as questions or comments. These can be used as a surrogate to understand the perceptions of the public.
Objective:
We analysed the comments of all videos related to PCOS published on YouTube® from May 2011 to April 2023 and identified the trends over time of these YouTube® comments, their context, associated themes, gender-based differences, and underlying sentiments in the comments.
Methods:
After extracting all the comments using YouTube® application programming interface, we contextually studied the keywords and analysed for gender differences employing Benjamini-Hochberg procedure. We applied a multidimensional approach to analyse the content via association mining using Mozdeh®. We performed network analysis to study associated themes using Fruchterman-Reingold algorithm and then manually screened the comments for content analysis. The sentiments associated with YouTube® comments were analysed using Sentistrength®.
Results:
A total 85,872 comments from 940 PCOS videos on YouTube® were extracted. We identified specific gender for 13,106 comments. Of these, 1506 were matched to male users (11.5%) and 11,601 comments were by 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 (such as helpful and love), negative personal experiences (such as fatigue and pain), motherhood (such as infertility and trying to conceive), self-diagnosis and usage 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 members. The overall average positive sentiment was 1.6651 (CI: 1.6593, 1.6709) and average negative sentiment was 1.4742 (CI: 1.4683, 1.4802) with a net positive difference of 0.1909.
Conclusions:
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 healthcare services. Prioritising and promoting evidence-based care, formulation of pragmatic online coverage spread are warranted to continue improving public sentiments trends and limit misinformation.
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.