TikTok Misinformation and User Engagement in Female Pelvic Floor Conditions

Abstract

Importance:

Social media platforms are increasingly utilized to distribute medical information. Our study emphasizes the need for accuracy in pelvic health education on social media platforms and the involvement of female pelvic floor specialists’ in content creation.

Aims:

In this cross-sectional study, we assessed the female pelvic floor (FPF) TikTok videos with the highest engagement for quality of information and misinformation and investigated the relationship between misinformation and user engagement.

Methods:

We collected all TikTok videos on the U.S. app with hashtags related to FPF conditions, including 76 on pelvic organ prolapse, 323 on urinary tract infection, 84 on overactive bladder, and 972 on incontinence. The top 20 videos for each FPF condition were selected based on highest engagement, and 74 videos total met inclusion criteria. TikTok videos were scored with the validated DISCERN instrument for quality of consumer health information and a five-point Likert scale for misinformation. The correlation between misinformation and user engagement was assessed.

Results:

Our analysis revealed positive correlations between higher average misinformation scores and shares (r = 0.37, p < 0.001), likes (r = 0.23, p = 0.004), and overall engagement (r = 0.25, p = 0.002) in FPF TikTok videos as a group, likely driven by the #UTI category. Most TikTok videos (96%) had poor quality of information (DISCERN score <3), and 18% of TikTok videos contained misinformation.

Conclusion:

The poor quality and prevalence of misinformation in FPF-related TikTok videos with highest engagement raise concerns about the propagation of non-evidence-based health information.

Introduction

TikTok is the fastest growing social media video platform worldwide and has revolutionized how people can create and share information through short video clips known as TikToks¹. Although primarily associated with teenagers, approximately one-third of TikTok’s global users are women aged 25 and above². Ethnographic analyses have revealed that many women rely on social media and online forums to bridge gaps in medical knowledge^3,4. It is estimated that one in five Americans consult TikTok before seeking medical attention for a health condition⁵. Female pelvic floor disorders affect about a quarter of women in the United States, and the prevalence increases with age⁶. Given the high burden of pelvic floor conditions, it is important to understand the quality of information available to the public, specifically on rapidly expanding platforms like TikTok which are widely utilized by adult women.

There are few publications assessing the content of female pelvic floor (FPF) videos available on TikTok, but overall, the information on incontinence⁷, urinary tract infections (UTI)⁸, and overactive bladder (OAB)⁹ is described as poor quality and containing significant misinformation^7-9. YouTube content on pelvic organ prolapse (POP) was also found to be low to moderate quality¹⁰.

There is less information on the relationship between content quality and user engagement in the FPF domains, highlighting a significant knowledge gap. Given the rapid and extensive adoption of TikTok by adult women and the limited research in this area, it is important to understand not only the quality of medical information on this platform, but also the drivers of video dissemination. Thus, our objectives are to (1) assess the TikToks with the highest engagement related to four common FPF conditions—UTI, POP, OAB, and urinary incontinence (INC)—for the prevalence of misinformation and the overall quality and (2) assess for correlation between user engagement and misinformation.

Methods

This study was determined exempt from our institution’s IRB. Between July and August 2021, we identified all TikTok videos on the U.S. app with the following hashtags: #pelvicorganprolapse (n = 76), #urinarytractinfection (n = 323), #overactivebladder (n = 84), and #incontinence (n = 972). We examined various hashtags with similar and related terms and selected the hashtags with the highest number of views for each FPF condition on the TikTok search bar. The videos were ranked by engagement, defined as the summed number of likes, comments, and shares. The top twenty videos were selected for further review as shown in Figure 1. Inclusion criteria included a minimum of 100 engagements, being in the English language, pertaining to adult human women, and content was related to the hashtag being assessed. Twenty videos were included from each category, except for #pelvicorganprolapse, which had 14 videos that met the minimum engagement criteria.

Figure 1.

Flowchart of TikTok Video Selection

We collected the following video data: caption, posting date, posting username, and publisher category (commercial entities, laypersons, or healthcare workers). Commercial entities were distinguished by the advertisement of products or services in the publisher’s biography or videos. Healthcare workers, such as physicians, physical therapists, acupuncturists, chiropractors, and nurses were distinguished by credentials in the video or biography. Healthcare workers were further categorized into female pelvic medicine physicians, other physicians, physical therapists, and other healthcare workers. Overall engagement was defined as the summed total number of likes, comments, and shares per post.

Videos were examined in random order according to hashtag by two reviewers specializing in female pelvic floor disorders. Reviewers were blinded to the publisher’s biography and the video posting date. TikToks were classified under three content categories: “sharing a patient’s story,” “informational content about condition, including screening, treatment, and/or side effects,” or “other.” In cases where reviewers selected different categories, a designated third person reviewed those videos to decide the final category. Coders rated each video on a 5-point Likert scale adapted from Tam et. al for misinformation, i.e., 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, 5 = strongly agree that the video contained misinformation⁸. A score > 3 indicated the TikTok video contained misinformation. Reviewers also completed the DISCERN tool, a 16-question validated instrument designed to judge the quality of consumer health information. DISCERN has items related to whether the content was reliable (questions 1-8), how well treatment choices were presented (questions 9-15), and the overall quality of healthcare information (question 16). Each question was rated from 1 = no, 3 = partially, and 5 = yes or overall quality rated from 1 = low, 3 = moderate, and 5 = high-quality¹¹. Questions 9-15 were skipped if the rater deemed there to be no content related to treatment choices. The overall mean DISCERN score was used for the analysis. The DISCERN tool was used in previous analyses of TikTok for urologic conditions with good inter-rater reliability^12,13.

Concordance rates are reported as the average percentage of times that both reviewers agreed on individual DISCERN and misinformation scores¹⁴. Continuous variables were analyzed with T-test or ANOVA and Chi-square or Fisher-exact test was used for categorical variables. Correlations were assessed utilizing Pearson correlation coefficient. All p-values within the model were two-tailed, with P < .05 considered significant. All analyses were conducted using SAS version 9.4. There was no missing data.

Results

When analyzing the most popular FPF videos as a group (n=74), there were weak positive correlations between a higher average misinformation score and shares (r = 0.37, p < 0.001), likes (r = 0.23, p = 0.004), and increased overall engagement (r = 0.25, p = 0.002). When each condition was analyzed separately, #UTI exhibited a moderate positive correlation between higher misinformation and shares (r = 0.45, p = 0.003). However, for #OAB, there were weak-to-moderate negative correlations between misinformation and engagement; higher misinformation was associated with fewer likes (r = −0.44, p = 0.005), comments (r = −0.35, p = 0.025), shares (r = −0.43, p = 0.006), and overall engagement (r = −0.44, p = 0.005). There were no significant correlations for #INC or #POP as individual categories.

The majority of TikTok videos (96%) were of low quality in terms of medical information (overall mean DISCERN score < 3). Eighteen percent of the TikTok videos evaluated contained misinformation. #OAB had the lowest percentage of videos that contained misinformation (0%), followed by #INC (20%), #POP (21%), and #UTI (30%). The inter-rater concordance was 90% for DISCERN scores and 77% for misinformation scores.

Table 1 describes key TikTok characteristics by hashtag. The hashtag #UTI had the highest mean number of likes (n=16026) and shares (n=1121), while #INC had the highest mean number of comments (n=255). #POP had the lowest measures of mean engagement, including likes (n=852), comments (n=32), and shares (n=26). Between 20-30% of publishers were laypersons across all hashtags. Commercial entities published more in #UTI (25%) and #INC (35%) than in #OAB (0%) and #POP (7%). Over 75% of videos under #UTI and #POP were informational content, while #INC had the highest percentage of TikToks “sharing a patient story” (40%).

Table 1.

TikTok Characteristics by Hashtag

Hashtag Category	#UTI	#INC	#OAB	#POP
Sample size (n)	20	20	20	14
Mean engagement (sd)	17327 (20805)	11340 (13219)	2205 (3303)	910 (1047)
Mean likes (sd)	16026 (19308)	10735 (12859)	2063 (3067)	852 (996)
Mean comments (sd)	180 (208)	255 (275)	58 (95)	32 (43)
Mean shares (sd)	1121 (2053)	349 (499)	84 (165)	26 (29)
Content category (%)
Sharing patient’s story	10%	40%	10%	14%
Informational content*	85%	50%	70%	86%
Other	5%	10%	20%	0%
Posting user type (%)
Healthcare worker (%)	55%	35%	80%	64%
Layperson (%)	20%	30%	20%	29%
Commercial entity (%)	25%	35%	0%	7%
Unique publishers	15	18	8	9
Posted by physician (%)	25%	5%	40%	50%
Mean misinformation (sd) **	2.9 (1.0)	2.6 (0.8)	2.0 (0.5)	2.2 (1.0)
Misinformation > 3 (%)**	30%	20%	0%	21%
Mean DISCERN (sd) **	1.8 (0.4)	1.7 (0.4)	2.0 (0.5)	2.0 (0.5)
DISCERN < 3 (%) **	100%	95%	100%	86%

Abbreviations: UTI, Urinary Tract Infection; INC, incontinence; OAB, overactive bladder; POP, pelvic organ prolapse; SD, standard deviation.

^*Information content related to condition, including screening, treatment, and/or side effects.

^**A higher misinformation score indicates a stronger agreement that misinformation was observed in the TikTok (5=strongly agree the TikTok contains misinformation), and lower DISCERN score indicates lower quality information (1=serious or extensive shortcomings, low quality). Misinformation scores > 3 indicate the presence of misinformation and DISCERN scores <3 indicate poor information quality.

Healthcare workers had the greatest relative representation as publishing users across all hashtags and were highest within #OAB (80%). However, TikTok videos posted by physicians were ≤50% across all hashtags and were the lowest within #INC (5%). #OAB and #POP were the only categories to have videos posted by physicians who specialize in female pelvic medicine/urogynecology.

Discussion

Our analysis of TikTok videos pertaining to four common female pelvic floor conditions showed that when analyzed as a group, higher user engagement was associated with more misinformation, and there was a correlation between shares and likes and the presence of misinformation. The majority of these most popular videos contained low quality medical information. These results raise concerns regarding the propagation of non-evidence-based health information for FPF conditions on TikTok. We additionally found differences in publisher type, with female pelvic medicine/urogynecology physicians under-represented across all FPF categories.

Our findings are consistent with prior research on FPF-related TikToks, which reported low to moderate information quality using the DISCERN tool^7,9 and frequent presence of misinformation^8-9 in the areas of incontinence, OAB and UTI. Although there is a growing body of literature describing the high volume of inaccurate educational information related to urologic and gynecologic conditions on social media platforms, there is very little data on what type of posts have the highest rates of engagement and dissemination. We found that as a general category, higher user engagement was associated with more misinformation in FPF TikToks. It is difficult to draw conclusions within individual hashtags/conditions given that we intentionally limited the analysis to the top 20 videos in each condition. However, even with this limitation, there was moderate correlation between higher misinformation scores and shares in the #UTI category – this may be due to overall higher engagement numbers making it more likely to detect a statistical relationship or something about the condition itself that leads to a greater likelihood of misinformation being shared. Alternately, it’s unclear why #OAB as a separate category was found to have higher engagement measures correlated with lower misinformation. #OAB also had the highest relative representation of healthcare workers as publishing users, though there was no statistically significant relationship between publishing users and misinformation. In other areas of urology, Alsyouf et al. reported that articles on genitourinary malignancies with more misleading or inaccurate information were more likely to be shared¹⁵, while other studies found that UTI TikToks with more "likes" were less likely to contain misinformation⁸ and more “reliable” premature ejaculation TikToks had significantly higher engagement¹⁶, highlighting the variable nature of engagement with urology content on social media.

Though the videos we analyzed do not necessarily spread harmful information, it is important to appreciate that a single TikTok post can influence tens of thousands of people as TikTok is being increasingly used as a health information source. A recent study showed that the top 100 videos on #IUD were more likely to highlight negative side effects, which could potentially affect the healthcare decisions of thousands of women¹⁷. While the patient experience is important to understand, it would be beneficial to have to have similarly engaging content that can present balanced information. Healthcare professionals can play an important role in shaping public health education, but our study revealed a lack of female pelvic medicine physician representation in the most popular FPF TikTok videos. Notably, the videos in #OAB and #POP were the only categories that included videos posted by female pelvic medicine physicians, indicating that physicians specializing in FPF disorders are either not utilizing the platform or are not creating content that garners widespread engagement.

While a strength of our study included the use of a validated instrument to assess health information quality, we encountered limitations using DISCERN to evaluate TikTok videos. Designed to assess written content in a traditional format, DISCERN proved to be less suitable for the short video durations and limited information provided in TikToks. DISCERN is commonly used to assess video health information, but many of the DISCERN categories were not relevant or not well suited for evaluating TikTok content. Additionally, there are not universally accepted DISCERN scoring guidelines¹⁸ or a standardized misinformation scale for assessing health information. There is therefore considerable variability in methods used to assess social media health content⁷ with some authors choosing individual items from DISCERN and others using non-validated Likert scales⁸. A single item misinformation scale likely does not capture the related but separate components of the amount of misinformation and the importance of the misinformation relative to degree of potential harm to viewers. This limitation highlights the need for development of validated measures of quality and misinformation specific to health advice delivered via short-form videos^8,12. Furthermore, since the videos often share personal stories or discuss symptoms rather than focusing on treatment, the treatment-centric nature of the DISCERN tool may not fully capture important qualities of health-related TikToks. For instance, our reviewers found that many videos lacked clear objectives, which is measured as part of the DISCERN tool. However, they also noted that videos often used medical terminology that might not be suitable for laypeople, a variable that may be important for user engagement or comprehension but is not captured by DISCERN.

While our study demonstrated acceptable inter-rater reliability, we recognize the possibility of reviewer bias when assessing overall quality and misinformation. Furthermore, our sample size was constrained as we intentionally focused on the top twenty videos determined by user engagement. Despite this limitation, the statistically significant findings we obtained likely indicate conservative estimates of the observed correlations. Additionally, different hashtags may exhibit varying levels of engagement and misinformation overall, which may influence the generalizability of our findings. It is important to consider that TikTok is a dynamic platform with new content being posted daily, thereby subjecting the information landscape to continuous change. However, recently published data based on urinary incontinence videos analyzed in 2023 continue to show low quality FPF content on TikTok⁷, therefore the correlation between misinformation and layperson engagement and dissemination remains an ongoing concern. As more healthcare professionals contribute to the platform, we anticipate the potential for evolving trends and increased accuracy in FPF-related content on TikTok.

Conclusion

Our study indicates that the most popular TikToks in the female pelvic floor space generally exhibit low to moderate quality. Additionally, we observed a correlation between misinformation and higher levels of engagement in the overall group of FPF videos, especially in terms of shares. There is a deficiency in public education regarding female pelvic floor disorders, and social media platforms such as TikTok present an opportunity to inform and empower women on these issues. There is a clear need for more female pelvic floor specialists to disseminate high-quality healthcare information. This study emphasizes the importance of creating content that is not only high-quality, but also engaging to users. We encourage potential partnerships between professional societies and digital marketing agencies or established content creators to effectively reach the public.