Objective

To characterize the decision-making process and illness experience of women with pelvic organ prolapse (POP) using large-scale social media analysis.

Methods

Digital ethnographic analysis of online posts identified through data mining was performed. Grounded theory methodology was applied to 200 posts via traditional hand coding. To supplement our qualitative approach, we applied a Latent Dirichlet Allocation probabilistic topic modeling process to review the entire data set of identified posts to ensure thematic saturation.

Results

There were 3451 posts by 2088 unique users from 117 websites worldwide that were identified via social media data mining. We found that the anonymity of online forums allowed for information and support exchange among women with POP. Our analysis revealed that the exchange of online information aids in the decision-making process and, in some instances, appears to be the primary source of information. There was confusion about the anatomical and surgical complexities of prolapse. Our study also identified misconceptions, perceived risk factors, prevention methods, and management recommendations that were discussed online.

Conclusions

This large-scale online community-based analysis demonstrated the utility of social media to better understand women's experiences with POP. Thematic findings highlighted essential concerns and challenges involved in the surgical decision-making process and the understating of the anatomical complexity of sector defects, specifically to cystocele, rectocele, State specific defects.

Objective

To evaluate the level of evidence behind recommendations on social media for disease prevention in five lower urinary tract symptoms.

Materials and methods

We conducted a digital analysis of anonymous online posts on social media sites collected by a social media data mining service. One thousand posts about pelvic organ prolapse, stress urinary incontinence, overactive bladder, urinary tract infection, and interstitial cystitis/bladder pain syndrome were randomly selected. We analyzed these posts for recommendations regarding the prevention and treatment of these diseases, which were then compared to recommendations in available clinical guidelines and assessed for level of evidence.

Results

A total of 158 of 1000 posts contained 239 prevention strategies. For pelvic organ prolapse, there were 41 strategies identified, 25 (61%) of which had no evidence. For urinary tract infection 14 of 58 (29%) had no evidence, including recommendations for dietary modifications and urinary alkalization. For overactive bladder 8 of 28 (29%) had level 4 or no evidence. For stress urinary incontinence, 12 of 34 (36%) of prevention strategies had no evidence, such as laser rejuvenation and bladder training. Interstitial cystitis had the highest number of prevention strategies, and most were low or nonevidence based (70/79, 89%).

Conclusion

Prevention and treatment strategies are common in online discussions of pelvic floor disorders, but at least one third of these recommendations have no evidential support. There is a role for further online education and social media engagement by health care specialists to promote evidence-based practices.