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Article

A Quality and Completeness Assessment of Testicular Cancer Health Information on TikTok

by
Hoi Pong Nicholas Wong
1,*,
Lee Jing Yang
1,
Vikneshwaren S/O Senthamil Selvan
1,
Jamie Yong Qi Lim
1,
Wei Zheng So
2,
Vineet Gauhar
3 and
Ho Yee Tiong
2
1
Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore 308232, Singapore
2
Department of Urology, National University Hospital, Singapore 119074, Singapore
3
Department of Urology, Ng Teng Fong General Hospital, Singapore 609606, Singapore
*
Author to whom correspondence should be addressed.
Soc. Int. Urol. J. 2024, 5(3), 182-191; https://doi.org/10.3390/siuj5030028
Submission received: 4 December 2023 / Revised: 12 January 2024 / Accepted: 27 January 2024 / Published: 5 June 2024
Browse Figure
Versions Notes

Abstract

:
TikTok has become a hub for easily accessible medical information. However, the quality and completeness of this information for testicular cancer has not been examined. Our study aims to assess the quality and completeness of testicular cancer information on TikTok. A search was performed on TikTok using the search terms “Testicular Cancer” and “Testicle Cancer”. Inclusion criteria encompassed videos about testicular cancer in English. We excluded non-English videos, irrelevant videos, and videos without audio. We evaluated these videos using the DISCERN instrument and a completeness assessment. A total of 361 videos were considered for screening and 116 videos were included. Of these, 57 were created by healthcare professionals (HCPs). The median video length was 40 s (5–277 s), with >25 million cumulative views and a median of 446,400 views per video. The average DISCERN score was 29.0 ± 5.7, with HCPs providing higher-quality videos than non-HCPs (30.8 vs. 5.5, p < 0.05). HCPs also had more reliable videos (21.2 vs. 18.1, p < 0.05). Overall quality levels were mostly poor or very poor (97.4%), with none being good or excellent. Most HCP videos were poor (63.2%), whilst many non-HCP videos were very poor (61.0%). The most viewed video had 2,800,000 views but scored a 31 on the DISCERN tool and one on the completeness assessment. The highest DISCERN score had 11,700 views. HCP videos better defined the disease and were more complete (p < 0.05). Most videos discussed self-assessment but were lacking in definitions, risk factors, symptoms, evaluation, management, and outcomes. Most of TikTok’s testicular cancer information lacks quality and completeness, whilst higher-quality videos have limited reach.

1. Introduction

Testicular cancer is a rare but highly treatable malignancy that poses a significant health concern for men worldwide [1]. It typically affects men in their prime reproductive years and is often asymptomatic in the early stages. If symptomatic, patients can develop a dull testicular ache, notice asymmetric testicular growth, and even severe pain if complications such as severe hemorrhage arise [2]. This makes early detection through screening and patient education important and crucial for improved patient outcomes. Whilst traditional sources of medical information, such as seeing the doctor or reputable online sources, continue to play a vital role in health literacy and awareness, the digital age and social media frenzy has ushered in a new era of information-sharing via readily available and entertaining social media platforms [3,4].
One such platform, TikTok, has emerged and is a thriving global phenomenon, captivating the attention of millions with its short-form, engaging videos [5]. The effectiveness of its algorithm to feed the viewer videos that are catered to their liking, the accessibility, and the user-friendly interface have made it a popular destination for individuals seeking a diverse range of content that spans from short laughs to serious health-related information [6,7]. This paradigm shift towards social media as not just any other source but the primary source of medical knowledge presents both opportunities for growth and notable challenges. Unfortunately, the proliferation of information on TikTok has created a double-edged sword. While TikTok is one of the most commonly used platforms now, there are still other social media platforms available on the Internet. On the one hand, this unique avenue for the quick dissemination of important health education and information to a vast and diverse audience has been applauded for its ability to break down traditional barriers of communication [8]. Conversely, the lawfulness and freedom of information has raised multiple concerns about the accuracy, completeness, and quality of the content shared. Previous studies on TikTok health information have showcased that there is content of urological and non-urological conditions that are riddled with misinformation, with only a handful of good, high-quality education material [9,10,11].
Hence, we sought to navigate this evolving landscape by systematically appraising the content available on TikTok. Our study aims to provide a comprehensive assessment of the available information’s quality using the DISCERN score as well as a completeness assessment.

2. Materials and Methods

2.1. Search Strategy

A systematic search was performed on TikTok using the search term “Testicular Cancer” and “Testicle Cancer” on 22 August 2023 with no date limits. There were no filters or specific search terms applied to the search and the videos were obtained solely from TikTok’s search algorithm. The videos were searched by two independent reviewers and filtered accordingly. As we solely used the search terms “Testicular Cancer” and “Testicle Cancer” to search for videos instead of using the TikTok algorithm, this included all the videos regarding testicular cancer on TikTok, disregarding wholly the biases of the TikTok algorithm. The results were then considered and screened by two independent reviewers (J.Y.L. and V.S.) for their relevance. The inclusion criteria included all videos that included any information surrounding testicular cancer. For the purpose of this study, videos that were not in English, duplicates, irrelevant videos, or videos with no audio were all excluded. The creator identity was then dichotomized into healthcare professionals (HCPs) versus non-healthcare professionals, whereby the former included board-certified doctors, medical students, nurses, other allied healthcare professionals, traditional Chinese medicine practitioners and acupuncturists, amongst others.

2.2. Data Extraction

Data from these videos were then retrieved and analyzed systematically. Basic categorical information, such as the link to the video, the author’s identity as an HCP or non-HCP, the duration of the video, the number of likes, views, comments, and shares were tabulated. The quality of the videos’ content was then independently analyzed by two separate analysts (J.Y.L. and V.S.) using the DISCERN instrument. Initially designed for written health information for patients, the DISCERN instrument is a well-known and widely adopted instrument used in the assessment of the quality of health information. It consists of a brief questionnaire of 16 questions on a 5-point scale (with a total 80 points) spread across 3 segments (the reliability of videos, quality of treatment choices, and overall rating) that distinguishes high- from low-quality information [12]. A further completeness analysis, as previously methodized by Goobie et al. [13], was also utilized. It is a six-part assessment that looks at the amount of content (none, some, or extensive) regarding varying areas of the conditions, such as definitions, risk factors, symptoms, evaluation, management, and outcomes. It is scored from 0 to 2 per segment, with a maximum total score of 12. Any conflicts in grading were taken note of and discussed in person until a consensus score was achieved. Further data analysis was performed on STATA Version 14.

3. Results

In the initial search on TikTok, 361 videos were eligible for the title and video screening. After consideration using our inclusion and exclusion criteria, as previously mentioned, 116 videos were eventually considered for inclusion and further analysis (Figure 1).

4. Video Characteristics

Of the 116 videos included, 57 were created by HCPs (49.1%) whilst 59 were created by non-HCPs (50.9%). The mean length of the videos was 59.8 s, with over 220,000 views on average for each video. Non-HCPs had the majority of the viewer counts, with many users sharing and depicting their personal experience with testicular cancer. Other characteristics of the analyzed videos are detailed in Table 1.

5. Inter-Rater Reliability

The inter-rater agreement and reliability between our two independent analysts were assessed via the calculation of the degree of agreement and Cohen’s Kappa for each statement assessed in the respective scoring mechanism. The observed degree of agreement for the DISCERN instrument ranged from 0.829 to 1.00, whilst that of the completeness assessment ranged from 0.733 to 0.991. Cohen’s Kappa ranged from 0.820 to 1.00 for all assessments, indicating significantly good inter-rater concordance and reliability (Table 2).

6. DISCERN Instrument: Quality of Health Information

The quality of health information surrounding testicular cancer available on TikTok is mostly poor or very poor (97.4%), with only a total of three videos scoring fair (2.59%), whereby two videos were made by healthcare professionals. No videos being considered were rated as good or excellent as defined by the DISCERN scoring system. Utilizing the two-tailed Student’s t-test, comparing across the categories of reliability, quality, overall scoring, and total scoring, it was evident that the HCPs created videos that were significantly more reliable and overall better scoring that their non-HCP counterparts (p < 0.05) (Table 3). Non-HCPs created videos that fell short numerically in all components comparatively. None of the videos analyzed scored the minimum 16 on the DISCERN instrument, suggesting that all the videos provided at least some amount of objective quality health information.

7. Completeness of Video Content

The six-part assessment of the completeness of the video content was carried out independently by two separate authors. Each segment was graded on a Likert scale from zero to two, indicating none, some, or extensive content, respectively. Notably, healthcare professionals scored significantly better in terms of defining the disease (0.42 vs. 0.20, p < 0.05) as well as the total scoring (2.60 vs. 1.95, p < 0.05). The highest-scoring video scored 8 out of the maximum of 12, with a mean completeness score of 2.27 ± 1.74. The point-by-point comparison between the HCP and non-HCP completeness of information in their videos is tabulated in Table 4. The eventual total scores in both the DISCERN instrument and completeness scoring did not correlate (r = 0.507).

8. Discussion

We present the first and only available study that investigates the quality and completeness of health information available on TikTok revolving around testicular cancer. Our findings suggest that healthcare professionals as a whole generate better quality and more complete videos than non-healthcare professionals, but, holistically, the videos are unfortunately still mostly of poor quality and completeness. The bulk of the videos created covered disease details such as symptoms and the evaluative process, whilst other pertinent features, such as the management strategies and clinical outcomes, were often left out.
With over 25 million views spread across the 116 included videos, it is important for us to assess the quality of the content surrounding testicular cancer available on TikTok. The short-form format of TikTok’s clips has the propensity to oversimplify complicated subjects and over-sensationalize facts with the eventual goal of attaining virality and higher views [14]. In our analysis, no videos were graded as excellent or good based on the DISCERN scoring criteria, whilst the most complete video available scored only 8 out of 12 on the completeness assessment, garnering only 270 views. The highest-viewed video was 13 s long, having at least 2,800,000 views and shared 16,000 times, despite scoring only 31 on the DISCERN tool (poor quality) and a meagre 1 on the completeness assessment (out of 12). Conversely, the highest-graded video using the DISCERN tool (51, fair) only had 11,700 views. Hence, it is clear that the good-quality videos were attaining low traction, whilst the highly viewed and shared videos were often of comparatively lower quality. Hence, our results have underlined the importance of the need for TikTok users to scrutinize the content that they consume, especially those that are health-related, given that the platform actively pushes highly viewed but likely imperfect videos surrounding the topic.
In today’s practice of evidence-based medicine, clinicians often turn to guidelines which are updated frequently for the management of common clinical diseases [15]. In urology, these are often the AUA and EAU guidelines. Despite the information being readily available online, the flood of medical jargon and terminologies makes it unfriendly and unintended for patient use [16,17]. The traditional role of good clinical counseling is hence to simplify these complicated terminologies to the layperson, allowing patients to access and benefit from the latest evidence-based treatment regimes [18]. In our observation, healthcare professionals, especially certified urologists, tend to provide videos that interpreted or quoted the guidelines, but were unfortunately incomplete, unclear, or less viewed. Videos that garnered the most views often described a personal anecdote with testicular cancer, or short videos that encouraged testicular self-examination, but which did not mention any guideline-based advice or regimes. Whilst seemingly unencouraging, it is important to note that these videos are still educational and true to a good extent, allowing patients to eventually benefit. Encouraging frequent self-examination and screening is indeed a strong pillar for the early detection of testicular cancer, which should be widely promoted [19]. However, the paucity of videos that encapsulate the whole topic makes it hard, if not impossible, for consumers to grasp the essential context or depth necessary to comprehend the full picture. This may be reflective of the concise format of TikTok’s videos. As a whole, the authors are encouraged that the content on TikTok surrounding testicular cancer is mostly true and promotes self-examination for cancer screening. There is, however, still room for more educational content that comprehensively details the different segments of testicular cancer according to current guidelines for better evidence-based patient education and advice. Recognizing the abundance of material on testicular cancer on TikTok and urging patients to properly assess Internet content are two ways urologists might improve patient care. A more thorough and precise understanding of testicular cancer among patients can be achieved by filling in specific knowledge gaps found in the study, stressing regular self-assessment, and offering additional information during consultations. Urologists can also help advocate for higher standards of quality in online health information portals.
TikTok, amongst various social media platforms, has been studied extensively for a myriad of clinical conditions for its utility in educating patients. This includes BPH, prostate cancer, and breast cancer, amongst others [20,21,22,23]. Most authors that studied health information on TikTok surrounding these conditions unanimously came to same conclusion that the information needs to be further enhanced given its substantial reach. It is also important to understand that medical misinformation has a large potential to cause patient harm [24]. Whilst it might seem logical to most to not accept the content on social media at face value, there is, conversely, a multitude of TikTok trends that have gone viral for the wrong reasons, culminating in severe injury or even death. This, amongst many others, includes the TikTok “Blackout Challenge”, which promises a satisfying adrenaline rush after participants asphyxiate themselves using household items into unconsciousness [25]. “Chroming” is another trend which involves the inhalation of toxic fumes from aerosol sprays, nail polish removers, and even paint containers, eventualizing in a fleeting and satisfying headrush [26]. Whilst seemingly obvious that these are unsafe, it is often the vulnerable minority and young who act upon it with inaccurate knowledge with the hope of garnering social media popularity and virality. The variety, velocity, and veracity of information on TikTok is thus important to be considered proactively during content creation and consumption to avoid the potential negative consequences.
Several other recent studies [27,28] have also reviewed the information surrounding testicular cancer on YouTube, a different social media platform. Studies of testicular cancer content on YouTube revealed a predominant deficiency in video quality, objectivity, and accuracy. In a specific study focused on the utilization of YouTube videos for patient education on testicular cancer screening [29], it was observed that, although the information presented was comprehensive, accurate, and reliable, the accessibility for lay individuals to locate pertinent content was hindered by the challenge of identifying the right keywords to search. Conversely, our analysis of content on TikTok exhibited a slightly different pattern. While TikTok videos were found to be less comprehensive compared to YouTube, they were generally accurate. Notably, these videos were also found to be easily accessible to the lay audience due to the minimal use of complex medical jargon and the ease of discoverability. This divergence can be attributed to the inherent dissimilarity in content formats between the two platforms. YouTube predominantly features longer-form content tailored to a broader, more mature audience, whereas TikTok is renowned for its short-form videos, often lasting less than a minute. This characteristic creates a platform that is conducive to quick, engaging content, particularly appealing to the younger demographic. Consequently, TikTok videos were naturally characterized by brevity and a direct, to-the-point approach.
The omnipresence of health information on social media is an enduring and never-ending facet of our technologically advancing era, poised to ascend as the eventual primary source for medical insights [30]. The landscape of health information dissemination is undoubtedly reshaping. This underscores the importance of a strategic approach: healthcare institutions, providers, and stakeholders ought to harness the potential of these platforms to not just combat misinformation, but also to serve as disseminators of evidence-based knowledge. Online initiatives that aim to raise awareness about testicular cancer, such as The OddBalls Foundation and Movember, are demonstrations of the power of social media in mobilizing communities and disseminating critical health information [31]. Paired with the knowledge of the constituents of good health information (such as the DISCERN score and the completeness assessment), there is great potential for elevating the discourse surrounding testicular cancer on TikTok.
Our study is unfortunately limited to only English videos on TikTok, and only sought to look at the quality and completeness of the health evidence available. Further studies should aim to assess the contents of other languages and the efficacy of the various modalities of information sharing, such as simple narratives to elaborate graphics. This would not only facilitate a more comprehensive understanding of the global landscape of health information on TikTok, but also address potential language-specific nuances and cultural variations in the way medical information is shared online. Whilst performing our research, it was also noted that multiple keywords were utilized when searching for the same subject. This change in search terms may have had an impact on the results, affecting the data’s comprehensiveness and inclusivity. A longitudinal prospective study can also be designed to compare traditional information outlets to new-age media such as TikTok. We implore further research to look into the potential for the use of artificial intelligence in creating such content as well.
We recognize that a larger sample size could enhance the generalizability of the findings. It is, however, also important to note that we meticulously screened and filtered all available videos on TikTok based on our predefined criteria. The inclusion of every eligible video aimed at maximizing the representativeness of the sample within the constraints of the available content on the platform. Despite the inherent limitations in the quantity of suitable videos, we believe that the selected sample provides valuable insights into the landscape of testicular cancer information on TikTok.

9. Conclusions

Our study is the first to appraise the information available on TikTok surround testicular cancer. The results have shown that the content has a large and broad reach filled with a myriad of content ranging from personal anecdotes with testicular cancer to screening advice by medical professionals. Unfortunately, the videos often were of poor quality and incomplete with regards to the reliability, definitions, risk factor identification, presentation of symptoms, investigative modalities, management principles, and outcomes. The information available on TikTok is vast and is expected to continue to grow. Patients should hence be cognizant and wary of baseless information and misinformation, and always seek traditional sources such as professional advice whenever uncertain. Moving forward, urologists and other stakeholders should proactively use social media as an effective tool in promoting better information for our patients.

Author Contributions

H.P.N.W.: Project development, data analysis, and manuscript writing. L.J.Y.: Data collection. V.S/O.S.S.: Data collection. J.Y.Q.L.: Manuscript writing. W.Z.S.: Project development and manuscript writing. V.G.: Project development and manuscript writing. H.Y.T.: Project development and manuscript writing. H.P.N.W., L.J.Y., V.S/O.S.S., J.Y.Q.L., W.Z.S., V.G. and H.Y.T. were involved in the conceptualization, methodology, and design of the study protocol. L.J.Y. and V.S/O.S.S. performed the data acquisition and scored the videos. H.P.N.W., J.Y.Q.L. and W.Z.S. wrote the initial draft. L.J.Y., V.S/O.S.S., V.G. and H.Y.T. critically reviewed the different versions of the draft and suggested improvements. All authors have read and agreed to the published version of the manuscript.

Funding

There was no funding for this cohort study.

Institutional Review Board Statement

Not applicable.

Informed Consent Statement

Not applicable.

Data Availability Statement

All data generated or analyzed during the study that are relevant are included in the published paper. The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

Conflicts of Interest

The authors declare no conflicts of interest.

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Siuj 05 00028 g001
Figure 1. Screening process.
Figure 1. Screening process.
Siuj 05 00028 g001
Table 1. Characteristics of the included videos.
Table 1. Characteristics of the included videos.
OverallHealthcare ProfessionalsNon-Healthcare Professionals
Number, n (%)116 (100)57 (49.1)59 (50.9)
Length (s)
 Median (Range)40 (5–277)34 (9–277)48 (5–240)
Views, n
 Median (Range)46,400 (270–2,800,000)38,500 (270–2,800,000)47,600 (842–2,600,000)
Likes, n
 Median (Range)1281.5 (5–349,600)736 (14–112,900)1780 (5–349,600)
Comments, n
 Median (Range)42 (0–6233)27 (0–1799)69 (0–6233)
Shared, n
 Median (Range)49 (1–18,500)44 (2–18,500)52 (1–17,400)
Table 2. Inter-rater reliability.
Table 2. Inter-rater reliability.
QuestionsInter-Rater Reliability (Cohen’s Kappa, 3 s.f.)
DISCERN Tool
1. Are the aims clear?0.991
2. Does it achieve its aims?0.901
3. Is it relevant?0.820
4. Is it clear what sources of publications were used to compile the publication (other than the author)?0.973
5. Is it clear when the information used or reported in the video was produced?0.982
6. Is it balanced and unbiased?0.838
7. Does it provide details of additional sources of support and information?0.955
8. Does it refer to areas of uncertainty?0.946
9. Does it describe how each treatment works?0.973
10. Does it describe the benefits of each treatment?0.982
11. Does it describe the risks of each treatment?1.00
12. Does it describe what would happen if no treatment is used?1.00
13. Does it describe how the treatment options affect quality of life?0.991
14. Is it clear that there may be more than one possible treatment choice?0.991
15. Does it provide support for shared decision making?0.964
16. Based on the answers to all of the above questions, rate the overall quality of the publication as a source of information about treatment choices.0.838
Completeness of Video Content
1. Definition0.961
2. Risk Factors0.990
3. Symptoms0.893
4. Evaluation0.874
5. Management0.952
6. Outcomes0.932
Table 3. DISCERN instrument score.
Table 3. DISCERN instrument score.
Overall (n = 116)Healthcare Provider (n = 57)Non-Healthcare Provider (n = 59)
DISCERN Instrument Score, mean (SD)
Reliability of Videos (/40)19.6 (4.3)21.2 (3.9) *18.1 (4.1) *
Quality of Treatment Choices (/35)7.77 (2.2)7.86 (2.4)7.7 (2.1)
Overall (/5)1.62 (0.8)1.74 (0.9)1.53 (0.7)
Total (/80)29.0 (5.7)30.8 (5.4) *27.3 (5.5) *
Quality Level as Defined by the DISCERN Score, n (%)
Excellent (64–80)000
Good (52–63)000
Fair (41–51)3 (2.59%)2 (3.51%)1 (1.69%)
Poor (30–40)58 (50.0%)36 (63.2%)22 (37.3%)
Very Poor (<30)55 (47.4%)19 (33.3%)36 (61.0%)
* statistically significant, p < 0.05, for the two-tailed t-test.
Table 4. Breakdown of scores for completeness of video content.
Table 4. Breakdown of scores for completeness of video content.
Overall (n = 116)Healthcare Provider (n = 57)Non-Healthcare Provider (n = 59)
Completeness of Video Content, n
Definition, n (%)
 084 (72.4)36 (63.2)48 (81.4)
 128 (24.1)18 (31.6)10 (16.9)
 24 (3.4)3 (5.26)1 (1.69)
Risk Factors, n
 0102 (87.9)47 (82.5)55 (93.2)
 17 (6.0)5 (8.8)2 (3.4)
 26 (5.2)4 (7.0)2 (3.4)
Symptoms, n
 063 (54.3)30 (52.6)33 (55.9)
 137 (31.9)20 (35.1)17 (28.8)
 215 (12.9)7 (12.3)8 (13.6)
Evaluation, n
 040 (34.5)18 (31.6)22 (37.3)
 163 (54.3)28 (49.1)35 (59.3)
 213 (11.2)11 (19.3)2 (3.4)
Management, n
 095 (82.0)48 (84.2)47 (79.7)
 119 (16.4)7 (12.3)12 (20.3)
 22 (1.7)2 (3.5)0 (0)
Outcomes, n
 097 (83.6)47 (82.5)50 (84.7)
 117 (14.7)8 (14.0)9 (15.3)
 22 (1.7)2 (3.5)0 (0)
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Wong, H.P.N.; Yang, L.J.; S/O Senthamil Selvan, V.; Lim, J.Y.Q.; So, W.Z.; Gauhar, V.; Tiong, H.Y. A Quality and Completeness Assessment of Testicular Cancer Health Information on TikTok. Soc. Int. Urol. J. 2024, 5, 182-191. https://doi.org/10.3390/siuj5030028

AMA Style

Wong HPN, Yang LJ, S/O Senthamil Selvan V, Lim JYQ, So WZ, Gauhar V, Tiong HY. A Quality and Completeness Assessment of Testicular Cancer Health Information on TikTok. Société Internationale d’Urologie Journal. 2024; 5(3):182-191. https://doi.org/10.3390/siuj5030028

Chicago/Turabian Style

Wong, Hoi Pong Nicholas, Lee Jing Yang, Vikneshwaren S/O Senthamil Selvan, Jamie Yong Qi Lim, Wei Zheng So, Vineet Gauhar, and Ho Yee Tiong. 2024. "A Quality and Completeness Assessment of Testicular Cancer Health Information on TikTok" Société Internationale d’Urologie Journal 5, no. 3: 182-191. https://doi.org/10.3390/siuj5030028

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