Women presenting with pelvic floor disorders like urinary incontinence and pelvic organ prolapse (POP) are highly motivated to use Internet and social media (SoMe) platforms to learn about their diseases.¹ Approximately 59% of patients less than 65 years old and 40% of patients greater than 65 years old reported using SoMe to learn more about their pelvic floor complaints.¹ SoMe studies have been conducted using keywords like “urinary incontinence” and/or “pelvic organ prolapse,” and findings emphasize the widely varying content available to patients.^1–3 The following is a review of patient-centric studies assessing the role of SoMe in pelvic floor disorders (see figure).

Figure. Patient-centric studies assessing SoMe role in pelvic floor disorders.

YouTube

In a review of 100 YouTube videos on POP with a total of 6,307,202 views, researchers found 77% of videos contained poor quality content (ie videos omitting other treatment options, failing to discuss benefits/risks of treatment, and/or shared decision-making with health care professionals).² Despite YouTube being the most commonly used SoMe platform in the United States, over 50% of the POP videos had low levels of understandability (ie were difficult to understand), and 31% of videos contained misinformative or biased content. Surgery was the most common treatment option discussed across all videos.² Also, Sajadi and Goldman assessed the first 30 YouTube videos on urinary incontinence and reported over 50% of videos had misinformative content.³ Ultimately, patients may unknowingly encounter information that is low quality and hard to comprehend.

Instagram

A review of 105 Instagram posts with nearly 9,000 likes was conducted using the term “POP.”⁴ Researchers found more than 75% of POP posts had moderate to poor quality information and 25% of posts had commercial bias. Thirty-six percent of posts were not easy to understand (ie did not use common language or simple terminology), and 69% of posts left consumers unable to identify at least 1 action they could take to address their POP.⁴ Instagram is an easily accessible SoMe interface, yet only 8% of posts were uploaded by physicians, with the majority of posts published by health and wellness groups (44%). Furthermore, posts published by physicians did not contain misinformation or commercial bias. Pelvic floor muscle training was the most frequently mentioned treatment modality. Overall, POP posts on Instagram lack complete information, which may contribute to the preexisting lack of fundamental knowledge present for many consumers on the topic of POP.⁴

Pinterest

Pace et al analyzed 100 pins with >5 million followers on Pinterest using the search term “POP.”⁵ POP pins had moderate to poor quality information (69%); however, the pins were understandable and provided consumers with the ability to take action after viewing. Misinformation and commercial bias were present in 27% and 36% of pins, respectively. Health and wellness groups were the foremost publishers (33%). The most discussed treatment option was pelvic floor muscle training. This study concluded POP content on Pinterest contained pins that were easy to understand with poor quality information.

Online Support Communities/Reddit

Due to the sensitive nature of pelvic floor disorders, patients may feel more comfortable using online forums to discuss their challenges with women navigating similar experiences.¹ Gonzalez et al analyzed anonymous, online patient posts of women living with stress urinary incontinence and found online communities support women throughout their medical journey.⁶ These communities helped to guide women through their specialty care, quality of life management, and medical decision-making.⁶ The virtual emotional and social support created a space where patients could discuss their personal symptoms, seek information, and experience peer validation.

Another study used Reddit to evaluate the psychosocial experiences of patients living with urinary incontinence.⁷ Researchers identified 3 emergent concepts: self-isolation, acceptance of cognition, and an internal drive to manage their incontinence. Users in this community were self-aware of their symptoms and struggled connecting with others. The women were interested in finding products to help relieve their symptoms. Postpartum patients sought immediate help for their incontinence through pelvic floor muscle training. Ultimately, SoMe has developed a space for women in search of medical information and peer support while managing their pelvic floor disorders.

Podcasts

The podcast, Stitcher, has a female driven audience with over 12 million downloads. Using Stitcher, a review of 100 podcasts was conducted using the search term “stress urinary incontinence.” Many podcasts were low quality (67%) and difficult to understand (69%). The primary publishers of the podcasts were health and wellness groups (64%). The most discussed treatment was pelvic floor muscle training, followed by surgical management. Over 60% of podcasts mentioning treatment options failed to address shared medical decision-making. As patients with intimate medical conditions seek additional knowledge on SoMe, providers should be aware of the quality and difficulty of these supplementary resources.

Among physicians, SoMe is an emerging medical educational outlet used to discuss topics like urinary incontinence and POP. In urology, SoMe has been used to: spread information from prominent medical journals, facilitate discussions with diverse audiences, identify improvements in patient educational materials, and improve access to online surveys.⁸ Many Female Pelvic Medicine and Reconstructive Surgery (FPMRS) specialists use Twitter to spread medical information and to disseminate recently published articles. This serves as a vehicle to have real-time discussions and expand medical knowledge across specialties and to lay users.⁹ Similarly, medical journals are harnessing the force of SoMe to promote articles and to interact with users on the Internet.⁹ On Twitter medical journals can start a chain of tweets, called a “thread,” to garner attention from readers.⁹ This can work to increase readership while providing a secondary medium to spread medical information.⁹ When used correctly SoMe is a great tool to provide medical information on pelvic floor disorders outside the office.

There is a growing number of urologists and patients embracing SoMe. As urologists continue to use SoMe, they should remember that patients are searching for health information online and would benefit from recommendations of online search criteria, links to comprehensive videos, and/or SoMe presence of urologists.^2,10