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Feature Story

Searching for Answers: Using YouTube to Learn About Isotretinoin Therapy for Acne

January 2020

Patients are searching on YouTube for health care information at an increasing rate. Unfortunately, the majority of uploaded videos are not by health care professionals, which may lead to misinformation about isotretinoin for the treatment of acne.


Acne in a patientAcne is the most common condition seen by dermatologists, as it affects up to 85% of teenagers and young adults.1,2 The condition can severely affect quality of life, with its impact similar in nature to chronic diseases such as arthritis, diabetes, and asthma.3 It is no surprise that patients are eager to treat it aggressively and effectively. Isotretinoin was approved by the FDA in 1982 for the treatment of severe acne vulgaris.4 It is a very successful drug, treating upwards of 85% of acne with just 16 weeks of use.5

Patients may be apprehensive to start the systemic medication because of the frequent visits mandated by iPledge (an FDA program to reduce the rate of birth defects by isotretinoin), blood draws, and side effects.6 Additionally, the iPledge booklet is difficult to comprehend, so it can leave patients confused about the process.7 Patients may not get all their questions answered due to time-constrained office visits and may seek additional information from their peers or online sources.8

With the ubiquity of the internet, patients turn to online sources for information about potential therapies and prescription recommendations from their providers. As many as 80% of patients searched online for health information.9  YouTube is the second most-popular website in the world and thus a popular destination to learn about medical treatments.10 However, information on YouTube is not always accurate, especially when they are uploaded by nonhealth care professionals.11-13 Anecdotal stories from video bloggers may negatively influence future patients’ decisions to initiate isotretinoin therapy by citing incorrect facts about the medication or portraying their own negative experiences with the drug. A review by Madathil et al9 suggested there are, in fact, some videos on YouTube from government and professional associations that are high-quality and educational. A previous study showed that in 2014, of 100 dermatology videos on YouTube, only 35% featured an MD.14

Herein, this study aims to determine how many of the 100 most popular videos on YouTube using the search terms isotretinoin and Accutane come from reputable medical sources such as a board-certified dermatologist.

Methods
To the best of the author’s knowledge, this is the first paper investigating the content of videos on YouTube regarding isotretinoin. A literature search on PubMed using the combined terms YouTube and isotretinoin yielded no results. A second search on PubMed using the combined terms YouTube and Accutane also yielded no results.

The author queried the 100 most popular videos, as determined by view count, on www.YouTube.com with the search term Accutane on June 21, 2018. The 100 most popular videos using the term isotretinoin was also queried. Non-English language videos were excluded. No further filters were used to exclude the search results.

Results
The search using the term Accutane yielded 77,500 video results. The most-viewed video had 3.6 million views as of June 21, 2018. The 100th most-viewed video had 75,000 views. The top 100 videos totaled more than 30 million combined views.

In the top 100 most-viewed videos, the 30th, 82nd, and 91st most-viewed videos were the only three in which a board-certified dermatologist spoke about the medication. These three
videos amounted to a combined 457,000 views. Of the three videos that feature an MD, two are from the United States and one is from Australia. All three are board-certified.

The majority of videos were “personal journeys” in which the patient him/herself uploaded a video of his/her experience with the medication. These accounted for 95/100 videos, including the top 29 most-popular videos. Two videos were educational videos; however, they involved a speaker who was not a health care professional (Table 1).

Feature Table 1

The search using the term isotretinoin on June 21, 2018, yielded 14,300 video results. The most-viewed video had 1.2 million views. The 100th most-viewed video had 1200 views. The top 100 videos totaled more than 3.5 million combined views.

In the top 100 most-viewed, the 13th, 14th, 20th, 24th, 29th, 42nd, 43rd, 45th, 79th, 83rd, and 93rd most-viewed videos were the only 11 in which a dermatologist spoke about the medication. Of the 11 videos by dermatologists, five are from the United States, three from India, and one each from Canada, Brazil, and the United Kingdom (Table 2). 

Feature Table 2

Again, the majority of videos were “personal journeys.” These accounted for 79/100 videos, including the five most popular ones. Five videos were educational videos uploaded by nonhealth care professionals; two videos were about the iPledge process, two described how to pronounce isotretinoin, and one was entitled “isotretinoin” but did not discuss anything to do with the medication.

Discussion

Of the most popular videos on YouTube with the terms Accutane or isotretinoin, only 3% and 11%, respectively, involve a dermatologist speaking about the medication. The majority of videos are individual patients describing their anecdotal experiences while using isotretinoin.

Providers should counsel patients as much as possible through office visits, calls, and educational literature about the pros, cons, and alternatives of isotretinoin rather than leaving patients to learn about it on YouTube from nonmedical sources. Alternatively, providers should direct future patients to videos made by board-certified dermatologists or to dermatologist-run websites like www.dermtube.com.

The most popular videos on YouTube were personal patient narratives, which suggests they may be more relatable compared with videos by health care professionals. These anecdotes/narratives should be combined with direct knowledge from board-certified dermatologists to ensure patients get the most accurate information to make an informed decision.


Dr Om is a co-chief resident at the department of dermatology at Florida State University, College of Medicine, in Tallahassee, FL.

Disclosure: The author reports no relevant financial relationships.

References
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2. Dreno B, Poli F. Epidemiology of acne. Dermatology. 2003;206(1):7-10. doi:10.1159/000067817

3. Mallon E, Newton JN, Klassen A, et al. The quality of life in acne: a comparison with general medical conditions using generic questionnaires. Br J Dermatol. 1999;140(4):672-676. doi:10.1046/j.1365-2133.1999.02768.x

4. Zaenglein AL, Thiboutot DM. Acne vulgaris. In: Bolognia JL, Schaffer JV, Cerroni L, eds. Dermatology. Vol 1. 4th ed. Amsterdam, Netherlands: Elsevier; 2017:600.

5. Layton A. The use of isotretinoin in acne. Dermatoendocrinology. 2009;1(3):162-169. doi:10.4161/derm.1.3.9364

6. Magin P, Adams J, Heading G. Patients’ perceptions of isotretinoin, depression and suicide—a qualitative study. Aust Fam Physician. 2005;34(9):795-797.

7. Howard R, Smith G. The readability of iPledge program patient education materials. J Am Acad Dermatol. 2018;79(4):e69-e70. doi:10.1016/j.jaad.2018.05.038.

8. Shaw MK, Davis SA, Fleischer AB, Feldman SR. The duration of office visits in the United States, 1993 to 2010. Am J Manag Care. 2014;20(10):820-826.

9. Madathil K, Rivera-Rodriguez A, Greenstein J, et al. Healthcare information on YouTube: a systematic review. Health Informatics J. 2015;21(3):173-194. doi:10.1177/1460458213512220

10. The top 500 sites on the web. Alexa. https://www.alexa.com/topsites. Accessed January 10, 2018.

11. Yaylaci S, Serinken M, Eken C, et al. Are YouTube videos accurate and reliable on basic life support and cardiopulmonary resuscitation?. Emerg Med Australas. 2014;26(5):474-477. doi:10.1111/1742-6723.12274

12. Sorensen JA, Pusz MD, Brietzke SE. YouTube as an information source for pediatric adenotonsillectomy and ear tube surgery. Int J Pediatr Otorhinolaryngol. 2014;78(1):65-70. doi:10.1016/j.ijporl.2013.10.045

13. Gonzalez-Estrada A, Cuervo-Pardo L, Ghosh B, et al. Popular on YouTube: a critical appraisal of the educational quality of information regarding asthma. Allergy Asthma Proc. 2015;36(6):e121-e126. doi:10.2500/aap.2015.36.3890

14. Boyers LN, Quest T, Karimkhani C, Connett J, Dellavalle RP. Dermatology on YouTube. Dermatol Online J. 2014;20(6). https://escholarship.org/uc/item/5037g18h. Accessed January 5, 2020.