Isotretinoin on TikTok: A Qualitative Analysis of Attitudes, Perspectives, and Knowledge Dissemination of User-Generated Content

Abstract

Background: Acne vulgaris is an inflammatory skin condition that commonly affects adolescents and adults, which correlates well with the main demographic of TikTok (ByteDance Ltd., Beijing, China) users. This study investigates TikTok's role in disseminating knowledge, attitudes, and perspectives regarding isotretinoin among its users.

Methods: This study examined 50 TikTok videos related to isotretinoin. Independent reviewers performed thematic analysis, identifying key themes. Data on views, likes, comments, shares, hashtags, captions, and creator demographics were collected.

Results: Out of 50 videos, 14 had view count data (totaling 607,700 views). All videos had likes, comments, and shares (totaling 950,805 likes, 12,172 comments, and 13,195 shares). Video demographics included 42% of healthcare professionals (18 doctors/dermatologists, two pharmacists, and one dermatology nurse) and 58% of non-professionals (28 patients and one aesthetician), a significant percentage. The most frequently occurring hashtags were #accutane, #isotretinoin, #acne, #roaccutane, and #acnetreatment. The thematic analysis revealed eight themes related to the role of social media in shaping perceptions of the drug. These themes include psychological side effects and impact, personal experiences, treatment process and decision-making, awareness, misconceptions and communication, post-treatment considerations, and outlook. Notably, the discourse is dominated by non-medical content creators who often spread misinformation, particularly regarding mental health risks.

Conclusions: This study highlights TikTok's role in shaping perceptions of isotretinoin, revealing diverse user experiences and the impact of social media on health information. Healthcare professionals must engage with platforms to counteract misinformation and support informed decision-making. Future research should explore ways to improve the quality of health information on TikTok and evaluate its long-term effects on isotretinoin prescription uptake and treatment adherence.

Introduction

Acne vulgaris, affecting approximately 9% of the global population, primarily impacts individuals aged between 12 and 24 years, the predominant age group of TikTok (ByteDance Ltd., Beijing, China) users [1]. This study investigates the attitudes, perspectives, and knowledge dissemination of isotretinoin among TikTok users, focusing on the platform's effectiveness in sharing information on isotretinoin for acne treatment. The selection of isotretinoin as a focus for the study is justified by its effectiveness in treating acne, a common inflammatory skin condition affecting both adolescents and adults. Its significant role in acne treatment, as well as the fact that guidelines indicate that isotretinoin is typically prescribed in specialist care settings by medically licensed dermatologists for individuals with severe acne that has not responded to other treatments, or in cases where there is significant scarring, a high risk of scarring, or when acne is causing substantial psychological distress, makes it a key subject for investigation.

Isotretinoin is an oral systemic retinoid medication effective in treating acne at a pharmacologic dosage of 0.5 to 1.0 mg/kg per day. Despite its unclear exact mechanism of action, isotretinoin inhibits sebaceous gland function and keratinization, reducing sebaceous gland size and sebum production. It is indicated for severe, resistant, nodular-cystic acne unresponsive to conventional therapies [2,3]. However, there is a notable lack of public knowledge, particularly among teenagers, about isotretinoin's use, side effects, and monitoring requirements. Social media platforms like TikTok have become popular sources of health information, yet a literature review reveals only four articles on PubMed that specifically explore health information dissemination of isotretinoin on TikTok [4-7].

One article reveals that most videos highlight before-and-after improvements in acne severity, with comments primarily discussing side effects and personal experiences. This study suggests that while TikTok videos may shape perceptions and expectations of isotretinoin, they also encourage patient interest in exploring treatment options and facilitate discussions with healthcare providers [4].

Another study highlights the need for dermatologists to engage with trending social media content to better comprehend patient attitudes toward treatments like isotretinoin. Practical approaches, such as hashtag searches to identify popular content, are recommended. This enables dermatologists to anticipate potential misinformation and better address patient concerns and perceptions regarding isotretinoin and acne treatment. Staying informed about social media trends allows dermatologists to offer patient-centered care that aligns with patients' perspectives and needs [5].

A cross-sectional study of popular TikTok videos on isotretinoin revealed issues concerning misinformation, particularly regarding mental health risks. Non-medical content creators largely dominate this discourse, exacerbating the dissemination of misinformation. This detrimentally influences public perceptions and adherence to isotretinoin treatment. Consequently, the study explores the imperative for increased involvement of healthcare professionals in social media spaces to counteract and offer reliable medical guidance [6].

The above sentiment is also echoed by the final article, which discusses the prevalence of misinformation regarding the mental health effects of isotretinoin on TikTok. Despite recent research indicating a lower risk of psychiatric side effects, many TikTok videos and comments suggest a high risk of negative mental health effects, including depression and suicide. Most of these videos are not produced by experts such as dermatologists. The authors suggest this misinformation could lead to unjustified concerns and hinder patients from seeking necessary medication. They propose increased involvement of health professionals or artificial intelligence (AI) to combat misinformation on social media platforms [7].

The existing literature highlights TikTok's impact regarding the dissemination of reliable isotretinoin-related information, both personal and educational. Yet, significant gaps persist, notably the lack of research on TikTok users' perceptions and experiences regarding isotretinoin. This study aims to address this shortfall, providing comprehensive insights into attitudes, perspectives, and information dissemination.

Materials and methods

On February 12, 2023, the video search for this study was initiated on TikTok, using the following hashtags in a single search query: #roaccutane, #accutane, and #isotretinoin. The retrieved videos were sorted by relevance, commencing with the most relevant video and proceeding sequentially. The inclusion criteria were as follows, and all criteria had to be met for a video to be included in the study: 1. The video was in the English language; 2. The video contained educational content, attitudes, or perspectives related to the use of isotretinoin in its audio content; 3. The video primarily focused on isotretinoin-related topics.

Exclusion criteria were as follows: 1. Duplicate videos or similar content from the same creator were excluded; 2. Videos that were predominantly visual with minimal or no audio content were excluded.

The selection process continued until 50 videos that fully met the inclusion criteria and avoided the exclusion criteria were identified for thematic analysis and agreed upon by both independent reviewers (AA and LH). To reach 50 videos, 102 videos were viewed in total (40 were excluded based on the exclusion criteria, and 12 were excluded based on not meeting the inclusion criteria). These videos were given anonymized TikTok numbers from one to 50 (TN1-TN50). The sample size of 50 was selected based on the principle of data saturation, as further videos were considered unlikely to provide additional insights into isotretinoin.

Data collection encompassed numerical information such as view count, likes, comments, shares, hashtags associated with the videos, video captions, and the identity of the video creator (e.g., doctor, patient, nurse, aesthetician, or pharmacist). Data extraction took place from February 19 to March 30, 2023, and following this, video transcription was done. Each reviewer then conducted an independent thematic analysis.

Following this, reviewers reconvened to discuss the emerging themes. A moderate level of inter-rater reliability was established. Subsequently, a joint coding manual was developed. A final combined thematic analysis was conducted, during which the identified themes were named and defined, and corresponding subthemes were appropriately integrated.

Results

Quantitative findings

The selected videos were posted on TikTok between 13^th August 2020 and 13^th February 2023. Fourteen out of 50 videos had data available for the number of views, which approximated 607,700 views in total. Fifty out of 50 videos had likes, comments, and shared data, of which they approximately totaled 950,805 likes, 12,172 comments, and 13,195 shares. The data were accurate as of 30^th March 2023 (Appendix A). Data was collected on the demographics of those creating the videos in relation to their occupation or patient status (Table 1).

Table 1

Demographic data: roles of TikTok video creators

Role	Number
Patient	28
Doctor/Dermatologist	18
Dermatology nurse	1
Pharmacist	2
Aesthetician	1

Data were also collected on the frequency of each hashtag that appeared in video captions (Table 2). The results are summarized below.

Table 2

Frequency of hashtag appearance in TikTok video captions

Hashtag	Frequency
accutane	35
isotretinoin	32
acne	29
roaccutane	29
acnetreatment	11
fyp	7
skincare	7
foryoupage	4
skincaremyth	4
dermdoctor	4
trending	4
acnediaries	4
stitch	4
hormonalacne	4
dermnurse	3
acneskincare	3
dermbypark	3
acnescars	3
dermdoctor	3
skincareroutine	3
cysticacne	2
help	2
nosejob	2
duet	2
isotretinoinjourney	2
dermnurse	2
skintok	2
drdray	2
acnediary	2
spironolactoneskin	1
retinol101	1
roaccutanejourney	1
greenscreen	1
skinsafe	1
aesthetic	1
skincaremiracle	1
collagen	1
alixearle	1
aussie	1
sunburn	1
trending	1
spironolactone	1
acneskin	1
skincare	1
drsugaiskincare	1
mythbust	1
skinbydrazi	1
roaccutanejourney	1
dermreacts	1
roucutan	1
acnediaries	1
drnomzzy	1
skincare	1
sensitveskin	1
sideeffects	1
pores	1
skinhealth	1
isotretinoincheck	1
skincaremyth	1
acneskincareroutine	1
skincaretips	1
drdray	1
drdrayzday	1
drdrayrecommended	1
drsugaiexplains	1
sideeffects	1
dermatologist	1
acnejourneytoclearskin	1
darkskin	1
acnetreatment	1
londonskinclinic	1
roac	1
progress	1
darkskin	1
accnediary	1
londonskinclinic	1
acneproneskin	1
cysticacne	1
skinjourney	1
denverskindoc	1
acnejourneytoclearskin	1
pores	1
skinbydrazi	1
prescription	1
pharmacist	1
pharmacy	1
dermang	1
denverskindoc	1
skincaremyth	1
drdrayzday	1
accnediary	1
sensitveskin	1
i	1

Qualitative findings

The thematic analysis overall showed the emergence of eight themes and 28 subthemes. The results are summarized in Table 3.

Table 3

Thematic analysis of isotretinoin treatment: eight themes and 28 subthemes

1. Effectiveness and Benefits of Isotretinoin	2. Physical Side Effects and Challenges	3. Knowledge and Education About Isotretinoin	4. Psychological Side Effects and Impact	5. Personal Experiences	6. Treatment Process and Decision-Making	7. Awareness, Misconceptions, and Communication	8. Post-treatment Considerations and Future Outlook
1. Positive experience with isotretinoin; 2. Efficacy and benefits of isotretinoin; 3. Positive perception of isotretinoin	4. Physical side effects of isotretinoin; 5. Managing side effects; 6. Challenges of isotretinoin use	7. Individualized treatment and dosage; 8. Isotretinoin use, safety, and advice; 9. Educational value for patients, healthcare professionals, and students	10. Psychological impact; 11. Emotional side effects of isotretinoin; 12. Support system and encouragement	13. Personal experiences with isotretinoin; 14. Decision to start isotretinoin	15. Process of obtaining isotretinoin; 16. Information provided about isotretinoin's risks; 17. Medical monitoring and tests related to isotretinoin; 18. Evaluation for isotretinoin candidacy; 19. Ineffective prior treatments; 20. Need for dermatologist involvement	21. Clarifying misconceptions; 22. Lack of information and awareness on isotretinoin; 23. Importance of being informed; 24. Need for disclaimers	25. Reduced severity of acne post isotretinoin; 26. Limitations of Accutane in regulating hormones; 27. Post-Accutane health struggles; 28. Post-Accutane treatment considerations

Effectiveness and Benefits of Isotretinoin

The first theme that emerged was the 'Effectiveness and Benefits of Isotretinoin.' Within this theme, discussions highlighted the efficacy of isotretinoin in various aspects. Participants noted significant reductions in the appearance of scars, along with a shift towards positive experiences compared to prior treatments. This collective sentiment shows the profound impact of isotretinoin and its favorable perception among users. A testimony from TN29 encapsulates this theme succinctly: "I had so much scarring... Literally the one thing that has made my skin like this is Roaccutane. It's also called isotretinoin, and it is a godsend... the best thing I've ever tried."

Physical Side Effects and Challenges

A different theme, ‘Physical Side Effects and Challenges,’ elucidated the different struggles faced by individuals undergoing isotretinoin treatment. Discussions within this theme center on the management of isotretinoin-induced side effects, offering insights into the obstacles encountered during the course of this treatment regimen. This shows the need for management and integration of complementary therapies to mitigate distressing symptoms. Notably, participants commonly reported experiencing sun sensitivity, dryness, skin breakouts, and sore lips, underscoring the pervasive nature of these challenges. A reflection from TN47 encapsulates this theme, affirming, “I actually had to discontinue the medication a few months early due to the overwhelming intensity of the side effects.”

Knowledge and Education About Isotretinoin

Another theme identified was 'Knowledge and Education About Isotretinoin,' revealing crucial insights into the educational value of the videos. The content predominantly discussed the safety of isotretinoin usage. Numerous videos emphasized the pivotal role of information and guidance in ensuring the safe and effective utilization of isotretinoin. Key topics encompassed the significance of preventing pregnancy, understanding the mechanism of action, indications for use, dosage instructions advised by dermatologists, adherence to the medication regimen, and the correct method of consumption. A quote from TN20 encapsulates this sentiment: “Don't drink alcohol; it goes through the liver just like Accutane and can raise your liver enzymes and potentially lead to damage... It's important that Accutane is only taken by the person who it's prescribed for.”

Psychological Side Effects and Impact

Another theme emerged as 'Psychological Side Effects and Impact'. Discussions centered around the profound emotional and psychological toll experienced by individuals undergoing treatment. While some reported increased self-confidence as their acne improved, others endured heightened emotional distress and psychological symptoms. One participant recounted experiencing a 'depressive psychotic' episode, highlighting the severity of the impact and significance of supportive networks comprising family, friends, and healthcare professionals. A poignant reflection from TN28 encapsulates this theme: “As a month went on, I noticed that my mental health started to deteriorate really bad, and I actually started to go into quite bad depressive episodes. I found myself binge eating quite a lot to suppress my moods and try to make myself feel better, and I was sleeping a stupid amount, I'm talking like 13 hours a day... I also started to struggle with psychotic symptoms when I was driving and things like that; I would see things that weren't there, I'd smell things that weren't there, things like that.”

Personal Experiences

A different theme, ‘Personal Experiences,’ sheds light on individuals' unique journeys. Participants shared insights into their decision-making processes regarding treatment initiation and recounted their encounters with various therapies. They emphasized the numerous steps involved in accessing treatment and articulated nuanced perceptions of their skin's transformation pre-and post-treatment. However, personal narratives exhibited diversity, with some individuals reporting minimal observable changes in their skin throughout the treatment duration. A poignant reflection encapsulating this theme comes from TN22: “I'm coming from a place where this all happened to me personally, and on top of that, Accutane did nothing for my skin... sadly I am not the only one that has that story.”

Treatment Process and Decision-Making

Another theme identified was ‘Treatment Process and Decision-Making.’ Contributors extensively discussed their experiences with prior ineffective treatments, often resorting to multiple rounds of antibiotic regimens before considering isotretinoin as a final option. Moreover, a significant aspect highlighted was the rigorous evaluation process preceding treatment initiation. For instance, individuals of childbearing age underwent mandatory pregnancy tests due to the potential adverse effects of isotretinoin on fetal development, showing consideration and awareness of potential risks integral to the treatment decision-making process. A poignant quote from TN34 encapsulates this sentiment: “They’ll talk to a dermatologist, the dermatologist will send you a leaflet in the post, and you'll obviously get to read over all the symptoms and get to read over all of the health risks involved with Accutane because there are a lot. There are a lot of health risks.”

Awareness, Misconceptions, and Communication

The penultimate theme, ‘Awareness, Misconceptions, and Communication,’ explored prevalent misconceptions and the significance of effective communication. Participants highlighted common misconceptions, revealing doubts about treatment efficacy stemming from insufficient information and awareness, which can significantly influence individuals' ability to make informed decisions. An excerpt from TN45 encapsulates this sentiment eloquently: “Now, it does have its side effects, and most are quite manageable, but because of that, it gets a bad rep online, and often patients dismiss it based on what they've heard from friends or online.”

Post-treatment Considerations and Future Outlook

The final theme identified was ‘Post-treatment Considerations and Future Outlook’. Key discussions revolved around the multifaceted approach required to manage acne recurrence, particularly in cases involving hormonal imbalances. Participants emphasized the importance of optimizing treatment outcomes by adopting personalized skincare routines and considering additional medications tailored to individual medical histories, all aimed at maximizing treatment efficacy. A quote from TN39 encapsulates this sentiment: “This means that my patients with hormonal acne still need something to treat their acne even after a round of Accutane. What could that something be depends on how badly their hormonal acne recurs. Options for hormonal acne depending on your risk factors include oral spironolactone, topical spironolactone ... or possibly birth control pills.”

For a more detailed insight, refer to Appendix B, which presents a more extensive thematic analysis. This appendix includes a substantial, though not exhaustive, selection of quotes from the transcripts to illustrate each identified theme and sub-theme comprehensively (Appendix B).

Discussion

To the best of our knowledge, this study is the first to conduct a thematic content analysis of TikTok videos on isotretinoin use, examining perspectives, attitudes, and educational value. These findings emphasize social media platforms' role in disseminating health information about dermatological treatments like isotretinoin. However, they highlight the need for dermatologists to monitor social media trends to understand patient perspectives [4] and address any misinformation that may discourage treatment [5-9].

Patients are increasingly turning to social media, including TikTok, a platform with over two billion downloads, for health-related information [8,9]. TikTok's predominantly young user base, with 63.5% under 24 years old, highlights the significance of addressing health concerns like acne in this demographic [6,8,10]. Such platforms facilitate education and Q&A sessions, enabling users to access information efficiently. Notably, social media serves as a rapid and effective medium for medical professionals and laypersons to share healthcare insights. With over 80% seeking medical information online and 90% of Gen Zs utilizing social media for medical advice, its role in healthcare dissemination is pivotal [11,12,13].

The diverse narratives of 'Personal Experiences' shed light on individual journeys with isotretinoin, revealing varied perceptions of treatment outcomes and skin transformation based on different underlying motivators to share one's experience online. This is in alignment with prior studies exploring the motivations for user engagement and content creation on TikTok [14].

Within our study, the significance of positive testimonials reinforces the efficacy of isotretinoin, particularly in addressing treatment-resistant acne. The theme of 'Effectiveness and Benefits of Isotretinoin' emerged, displaying the positive impact of isotretinoin on scar reduction, skin improvement, systemic benefits, significantly enhanced self-esteem, and improved mental well-being [4,7]. Users expressed satisfaction with the efficacy of isotretinoin, highlighting its transformative effects on their skin [15], as evidenced by testimonials like the one from TN29. This observation resonates with previous research, which contributes to the discourse on the portrayal of isotretinoin's mental well-being benefits on TikTok [4,7,15].

In contrast, our study also reveals users' experiences regarding the 'purging phase,' characterized by worsened acne prior to improvement. Despite its transient nature, this discomfort involves physical and psychological manifestations. Particularly, detrimental effects on well-being and self-perception correlate with heightened levels of anxiety among TikTok users [1,7]. The analysis of 'Psychological Side Effects and Impact' explores the emotional repercussions of isotretinoin treatment, ranging from self-confidence to severe psychological symptoms such as depressive episodes, psychotic manifestations, and suicidal ideation [4,7].

Our study’s theme of ‘Post-treatment Considerations and Future Outlook’ highlights the significance of tailored skincare regimens and supplementary medications in addressing acne recurrence following isotretinoin therapy [4,16]. This parallels prior research examining health promotion discourse on TikTok, highlighting its potential for health communication [17].

Furthermore, the theme of 'Knowledge and Education about Isotretinoin' underscores the pivotal role of high-quality educational content disseminated on TikTok, particularly in promoting safe usage, including pregnancy prevention, dosage guidelines, and adherence to treatment protocols [4]. Studies delving into the influence of TikTok on dermatological discourse shed light on its potential as a vehicle for education and patient engagement [8, 18]. These observations corroborate existing literature, accentuating the criticality of ensuring the quality of health information disseminated via social media channels such as TikTok [19]. While recognizing this promise, researchers caution against the prevalence of misleading and potentially harmful content circulating on the platform [11].

The discourse surrounding 'Awareness, Misconceptions, and Communication', focuses on the impact that misinformation and limited awareness can have on treatment decisions, emphasizing the necessity of effective communication aimed at dispelling misconceptions, particularly regarding isotretinoin [4, 6, 20]. Insights gleaned from studies examining negative user interactions with short-form video content on platforms like TikTok [21] suggest that the time-constrained nature of such videos is a factor. However, the dynamic nature of such platforms provides dermatologists with invaluable insights into patient perspectives and knowledge [12, 22]. Being vigilant on emerging trends and leveraging trending content could enable dermatologists to not only combat misinformation but also promote accurate and beneficial information, thereby fostering informed decision-making among patients [23].

To combat misinformation about isotretinoin on social media, healthcare professionals can create targeted educational content to address common misconceptions and offer evidence-based guidance. Artificial intelligence, in the form of bots, for example, could be used to identify and flag misinformation, particularly regarding mental health risks, and direct users to reliable sources provided by healthcare professionals. Artificial intelligence can employ natural language processing to identify misinformation using relevant keywords and post-corrective responses [24] and could be developed to monitor social media for emerging misconceptions. This allows timely intervention to prevent the spread of inaccuracies before they become pervasive. Collaborations between dermatologists and influencers can further amplify reliable health messages, ensuring they reach wider audiences effectively.

This study employs a rigorous methodology, utilizing thematic analysis of TikTok content to showcase our findings. However, limitations include potential investigator bias in video selection, which could influence findings, and hashtag search strategy methodology, which may not capture all relevant content. Additionally, the exclusive analysis of TikTok videos limits the breadth of the study by excluding other social media platforms that might offer a wider range of opinions and perspectives. Furthermore, it is important to acknowledge that TikTok is banned in some highly populated countries such as India, North Korea, Nepal, Afghanistan, Syria, and Somalia, with China using a domestic version called Douyin. This limited accessibility may not fully represent the diversity of experiences and views, thus limiting the extent of this study’s generalizability to global populations.

Conclusions

TikTok enables users to share varied experiences and views on isotretinoin treatment, revealing the intricate interplay between personal narratives and social media's influence. This study identified eight main themes and their sub-themes, offering insights into isotretinoin usage and the need for reliable health information online. Future research should investigate strategies to promote accurate health information on TikTok. Evaluating long-term effects of health education from TikTok regarding the impact on treatment adherence and patient outcomes is essential. In conclusion, accurate health information and online education are crucial. They foster important discussions, supporting better patient care and improving acne management.

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