This research did not involve the use of clinical data, human participants, or animals. All data analyzed were obtained from publicly available TikTok videos and creator accounts, and the research was conducted in accordance with the European General Data Protection Regulation. Creators’ and users’ names and other personally identifiable information were anonymized. As there was no direct participation of patients, no interaction with users, and no expected negative effects on creators, an ethical review was not deemed necessary, as per the RatSWD recommendations on research ethics self-assessment [22].

On average, comments were assigned to 1.4 categories each, leading to a total of 840 assigned categories. Comments were most often assigned to “self-attribution of behavioral patterns” (220/600, 36.7%), followed by “personal experience” (93/600, 15.5%), regarding the categories directly related to ADHD. Regarding the technical categories, commenting persons most frequently “tagged other users” (115/600, 19.2%). Table 4 shows an overview of the frequency of all categories.

To assess the prevalence of viewers “self-diagnosing” in the comments, we looked further into the categories “self-attribution of behavioral patterns” and “self-attribution of ADHD.” Agreement between raters for the category “self-attribution of behavioral patterns” was substantial, with a κ statistic of 0.638 (P<.001) and agreement for the category “self-attribution of ADHD” was moderate, with a κ statistic of 0.544 (P<.001). Examples of comments assigned to these categories include “wait so ur saying I might have adhd?” “Does that mean I have ADHD cause I do that,” and “me 100% of the time,” showing a varying degree of self-identification with the shown behavior or the disorder. Of the 600 comments, 220 (36.7%) comments solely indicated a self-attribution of ADHD-related behavioral patterns, and 32 of the 600 (5.3%) comments, a self-attribution of ADHD. In combination, 252 of the 600 (42%) comments indicate some sort of “self-diagnosis” with ADHD, which is shown in Table 3 under the newly summarized comment category “self-diagnosis.”

The number of comments indicating a possible self-diagnosis varied between misleading, useful, and personal experience videos, and the statistical analysis showed a significant association between the usefulness of the videos and the number of comments indicating a possible self-diagnosis. The strength of association was small (χ²₂=21.55; P<.001; V=0.190). Comments indicating a possible self-diagnosis were most common in videos categorized as personal experience (109/200, 54.5%), followed by useful (79/200, 39.5%) and misleading videos (64/200, 32%).

If differentiated between self-attribution of behavioral patterns and the self-attribution of ADHD, there was a significant association between the usefulness of the videos and the number of comments indicating a self-attribution of behavioral patterns. The strength of association is small (χ²₂=29.3; P<.001; V=0.221). Comments indicating a self-attribution of behavioral patterns were most common in videos categorized as personal experience (102/200, 51%), followed by useful (67/200, 33.5%) and misleading videos (51/200, 25.5%). The association between usefulness and the number of comments indicating a self-attribution of ADHD was not statistically significant (χ²₂=2.05; P=.359; V=0.058).

Besides the comments hinting towards a potential self-diagnosis, the frequency of other comments was also found to be associated with the usefulness of the videos. The attribution of behaviors typical for ADHD to others was also most common in personal experience videos (7/200, 3.5%), followed by useful and misleading videos (2/200, 1% and 0/200, 0% respectively; χ²₂=8.799; P=.012; V=0.121). Questions on ADHD, comments with personal experiences, and joking or ironic comments were most common in useful videos (χ²₂=7.79, P=.02, V=0.114; χ²₂=25.654, P<.001, V=0.207; χ²₂=14.198, P<.001, V=0.154, respectively; Table 3). Comments on how the shown behavior is not typical for ADHD, comments on the video content but unrelated to ADHD, as well as not interpretable comments were most common in misleading videos (χ²₂=21.797, P<.001, V=0.191; χ²₂=10.767, P=.005, V=0.134; χ²₂=13.264, P=.001, V=0.149, respectively; Table 4).

Many users turn to TikTok for health information or even health advice [8,28]. However, many studies have shown that health-related information on social media, particularly TikTok, is often inaccurate or misleading [14-16]. Given that the number of TikTok videos on ADHD has increased substantially over the recent years, we have analyzed the most popular TikTok videos on ADHD regarding their usefulness, understandability, and actionability as health information. In addition, we have explored viewer perceptions of these videos by analyzing the comments.

The most popular videos on ADHD between July 2021 and November 2023 averaged 10.2 million views, which is a considerable increase from the 2.8 million views that Yeung et al [16] reported in their study in 2022. This suggests that TikTok videos on ADHD are trending more than ever. We found a high proportion of these ADHD-related TikTok videos to be misleading (63/125, 50.4%), which is in line with the results of a study by Yeung et al [16] from 2022, where 52% of the included videos were misleading. While the prevalence of misleading information varies by health topic [14], many other studies report high rates of misinformation, for example, Aragon-Guevara et al [15] found 73% of videos providing informational content on autism to be either inaccurate or overgeneralizing.

This study shows that the information provided in TikTok videos on ADHD is easily understandable, as evidenced by high PEMAT-A/V understandability scores averaging 79.5%. While videos classified as useful scored significantly higher than misleading and personal experience videos, even misleading videos achieved an understandability score of 74%. Since the PEMAT-A/V does not assess the accuracy of the information, this indicates that potential misinformation was presented in an easily understandable way, possibly facilitating the distribution of false information. PEMAT-A/V actionability scores, however, were generally low. TikTok videos might provide information that is easy to understand, but rarely give recommendations or describe specific actions for the viewers to take, for example,“see your health care provider” or “take this medication.” Yeung et al [16] also reported low actionability scores, although their scores were higher than we found in this analysis. In particular, the useful videos in the study by Yeung et al [16] showed higher actionability scores (27.8%), which could be because a higher percentage of useful videos in their study was created by health care professionals (7/21, 33.3%), who might be more inclined to recommend appropriate action compared to private individuals. In comparison, only one of the useful videos in our analysis was created by a health care professional (1/24, 4.2%).

The low actionability of ADHD videos on TikTok raises concerns. Viewers are constantly provided with easily understandable information on symptoms and might recognize those symptoms in themselves. But the lack of clear guidance or actionable steps—such as encouragement to consult a health care professional or to seek a professional diagnosis and guidance on how to do so—may lead to insecurity and act as a barrier to a formal diagnosis. Instead, viewers might self-diagnose and potentially also self-treat [18]. This is especially problematic for viewers with low health literacy. Clear guidance on subsequent actions, such as seeking a diagnosis and management of symptoms, would be highly beneficial, as these audiences might have difficulties accessing other health information and resources.

Our study found that misleading videos were the most popular, receiving the highest engagement through likes, views, and comments. However, the difference in likes and views between misleading videos and videos on personal experience was not significant. This is surprising, as other studies found that first-person and personal experience videos receive the most engagement, suggesting that social media users are drawn to relatable videos created by individuals who are personally affected by ADHD [16,29]. However, videos on personal experience that were misleading or overgeneralizing were categorized as misleading. Consequently, a substantial number of misleading videos also showed personal experiences, which might be one of the reasons why misleading videos in our analysis showed the highest engagement rates. The popularity of misleading videos is concerning. It has been shown that videos with high engagement are more likely to be further promoted by TikTok’s algorithm [30]. They appear more frequently on people’s For You Page, which increases their reach, can lead to even higher engagement rates, and consequently means that the misleading content is being distributed to an even wider audience. In addition, the algorithm pushes this content especially to viewers who have shown a previous interest in the topic or have engaged with similar videos. Repeatedly being shown individuals affected by ADHD, as well as mainly wrong depictions of symptoms, might increase viewers’ perceived susceptibility to ADHD, and together with the perceived low severity of ADHD that the misleading videos suggest, this might potentially increase self-identification [17].

Our analysis shows that misleading videos not only received the most comments in general, but compared to useful and personal experience videos, they also received significantly more comments that stated that the behaviors depicted were common to everyone, not just people with ADHD. A substantial number of people, therefore, commented to criticize the video, or to identify the information in the video as misleading. It is encouraging that many viewers are skeptical or disagree with misleading videos, and not all viewers self-identify with ADHD behaviors. However, their engagement with the video increases the reach of the video nonetheless.

A US survey showed that the most common reasons for using TikTok for health-related information are to receive advice from other people with similar health conditions, to receive support, or to get information on their disorders. Communicating with physicians and health care professionals ranked rather low on this list of reasons [8], explaining why personal experience videos might be so popular and why videos from health care professionals might be underrepresented in our sample of the most popular videos.

Since TikTok is primarily used for entertainment, it is not surprising that the explorative comment analysis revealed some comments as either joking or (supposedly) ironic in meaning (53/600, 8.8%). Many comments were also tagging other users (115/600, 19.2%), which can be understood as a form of online communication. Tagging of users is one way of sharing the video and many viewers were communicating with friends or acquaintances in the comments to the videos. Without further information, the interpretation of these comments is difficult, as the meaning of tagging another user can vary. Apart from sharing the video, it can also be interpreted as “that’s you” or even “that’s me,” or just to show that one might find this video interesting.

Viewers resonated with the behaviors depicted in the videos in a substantial number of comments, particularly in the personal experience videos. These videos, including “point-of-view” videos, show people with ADHD in everyday situations. Many viewers attributed these allegedly ADHD-typical shown behaviors to themselves, by commenting with phrases like “I’m so her,” “I do this all the time,” or “It’s like watching myself.” However, while comments relating to the depicted behaviors were most prevalent in personal experience videos, they appeared in the useful and misleading videos as well. Regarding the actual self-attribution of ADHD in the comments (eg, “I think I have ADHD,” “I really need to get evaluated,” or “Ok I counted and this is the 12th sign that I have ADHD”), the comments were less frequent and there was no significant difference between useful, misleading, and personal experience videos. These comments about relating to the behavior labeled as typical for ADHD in the video do not necessarily indicate an actual belief in having ADHD. As TikTok is a platform mainly used for entertainment, not all comments can be taken seriously. However, if many people who are not affected by ADHD relate to the shown behaviors, this can lead to an oversimplification of the disorder, potentially increasing stigmatization of affected people and reinforcing existing stereotypes rather than improving mental health understanding [12,20,21].

False assumptions that people have ADHD might lead more people to seek a professional diagnosis, potentially resulting in longer waiting times for diagnosis and an increased risk of overdiagnosis [31]. On the other hand, some individuals might just accept their self-diagnosis and therefore not seek a professional diagnosis, risking that comorbidities and differential diagnoses could be overlooked. In addition, if people believe that they are suffering from a disorder without getting the proper care and treatment, this can cause significant stress and anxiety [20,21]. Some individuals might even try to treat themselves without consulting a health care professional, possibly with inappropriate treatment options and medication.

TikTok is a platform where everyone can share videos and where the information in these videos is not fact-checked. Users, therefore, need to be cautious when watching videos on health-related topics and critically assess the information provided. Media and health literacy are needed for this, especially for children and teenagers, as they are the main users of TikTok. Even if TikTok users do not intentionally search for health information on TikTok, the probability of unintentionally being exposed to health information is high [8]. Users also underestimate their own susceptibility to misinformation, which poses a higher risk of following false health information, both consciously and subconsciously [8]. Furthermore, TikTok’s algorithm is designed to promote content based on the viewer’s previous interactions with similar content, as well as content with a high engagement rate, as is the case for misleading videos on ADHD [30]. Continuous exposure to misleading content that focuses on certain diseases or disorders can lead to distorted perceptions of the viewer’s own health and can worsen their mental health, especially for more impressionable viewers such as children and teenagers. The low actionability of these videos, which depict disorders without offering guidance or coping strategies, can further exacerbate these issues.

To counteract the vast amount of misleading information currently available on social media, it could be helpful if more health care professionals and educators step up and upload videos on health-related topics. These videos should be engaging, as we see that videos by health professionals are considered more boring, often lacking the entertainment value, trending sounds, and other creative and engaging strategies that other creators use [28]. By providing reliable resources, warning about the risk of, and debunking misinformation, health care professionals and organizations could become trustworthy information sources for TikTok users seeking health information. Although TikTok itself does not fact-check content, it does display a warning at the top of the search results indicating that TikTok is not a substitute for medical advice. However, this warning is only visible through the search function and not on videos that appear directly on the For You Page. Expanding these warnings to appear with all health-related videos could encourage viewers to critically assess the information and make more informed health decisions. In addition, it is important for health professionals to address social media–driven misconceptions and correct misinformation that potentially originate from social media during patient interactions.

We used the PEMAT-A/V to assess the informational quality of the videos. This tool can be used to assess the understandability and actionability of audiovisual patient education material. However, the TikTok videos included in this analysis were on average 44 seconds long, and 3 of the 13 understandability domains of the PEMAT-A/V require videos to be at least 60 seconds long to be rated. The PEMAT-A/V provides an overview of the quality of the included videos as informational or educational material; however, it is generally not ideally suited for such short videos, whose intended goal is more towards entertainment than education. However, the PEMAT-A/V does not only assess understandability but also actionability of the health information and is considered one of the better online health assessment tools [32].

Due to the purposive sampling strategy used for the comment analysis, generalization of the results to other videos on ADHD on TikTok is not possible. The videos included in the comment analysis were selected based on the categories of usefulness assigned beforehand and the analyzed engagement rate of the videos, but other videos could have yielded different results and therefore would have potentially led to different conclusions regarding the self-identification of viewers with the disorder.

In addition, the categorization of the comments on TikTok proved difficult. Viewers have diverse cultural and linguistic backgrounds; they are nonnative English speakers or post comments in other languages; abbreviate words or phrases; and use humor, irony, emojis, and slang. These factors, together with the varied professional backgrounds, ages, and social media familiarity of the researchers, led to differing interpretations of some comments, necessitating discussions to reach a consensus. TikTok is primarily a platform used for entertainment, and while we assessed humor and irony and subsequently excluded those comments, it remains unsure how many commenters really are serious about their self-diagnosis. It is possible that despite the extensive discussion between the 5 different researchers and efforts to ensure interrater reliability, some comments were misunderstood and miscategorized, and that the number of viewers potentially “self-diagnosing” therefore differs. Nevertheless, the analysis gives a valuable first impression of how TikTok users perceive and engage with videos that, to a great extent, contain false and misleading information.

ADHD is a popular topic on TikTok and videos on the topic are viewed by millions of users. While social media and TikTok have the potential to be an easily accessible and free source of health information for the population, the high prevalence of misleading and overgeneralizing content related to ADHD on TikTok is concerning. The widespread dissemination of this easily understandable information through the TikTok algorithm, together with the lack of actionable guidance in the videos, presents the risk of false self-identification and misdiagnosis with ADHD and can cause unnecessary stress, delayed appropriate treatment, unrecognized comorbidities, and increased stigmatization. It is important for viewers to critically evaluate information on health-related topics on social media and to assess the source or creator of this information. For health care professionals, it is important to address misconceptions arising from such platforms, and it would be beneficial for them to also use TikTok and produce engaging and accurate content to counterbalance the prevalent misinformation.