Journal of Clinical Neuroscience xxx (xxxx) xxx
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Clinical study
The reliability of Deep Brain Stimulation YouTube videos Shashwat Tripathi a,b, Karim ReFaey a, Rachel Stein a, Breanna J. Calhoun a, Amanda N. Despart c, Megan C. Brantley a, Sanjeet S. Grewal a, Alfredo Quinones-Hinojosa a, Robert E. Wharen a,⇑ a
Department of Neurologic Surgery, Mayo Clinic, Jacksonville, FL, USA Department of Mathematics, University of Texas at Austin, Austin, TX, USA c University of Rochester, Rochester, NY, USA b
a r t i c l e
i n f o
Article history: Received 3 December 2019 Accepted 8 February 2020 Available online xxxx Keywords: YouTube Patient education Deep Brain Stimulation DBS Parkinson Disease Quality of life
a b s t r a c t Background: Deep Brain Stimulation (DBS) was approved by the FDA in the 1990s and is used to treat a variety of movement disorders. Patients are increasingly turning to the internet for information regarding their ailments. In this study, we aim to evaluate the accuracy and reliability of information presented in DBS-related YouTube videos. Methods: Using the ‘‘Relevance-Based Ranking” strategy for analysis we assessed the first 3 pages of YouTube for each of the following keywords: ‘‘Deep Brain Stimulation”, ‘‘DBS”, ‘‘DBS for Parkinson’s disease”, ‘‘DBS for essential tremor”, and ‘‘DBS for movement disorders”. Four independent healthcare personnel evaluated the videos’ education quality and informational material using the validated DISCERN tool. Results: Our study found that only 24% of the 42 published videos analyzed scored above a 3 on the DISCERN scoring scale (considered a ‘‘good” video). The search term ‘‘Deep Brain Stimulation” had the highest percentage of good videos (DISCERN > 3) (32%). We also found that the duration of videos was longer for the ‘‘good” videos (Good = 25.6 min vs Unhelpful = 3.0 min, P = 0.01). Conclusion: YouTube is one of the largest video platforms; the uploaded videos lack reliability and institutional oversight by the experts. We believe that medical institutions should explore this way of communicating to patients by publishing evidence-based and informative videos on diseases and their management. As it is imperative that the medical field advance to combat medical misinformation. Ó 2020 Published by Elsevier Ltd.
1. Introduction Since the 1990s, Deep Brain Stimulation (DBS) has been used to treat various movement disorders including Parkinson’s disease, essential tremor and dystonia [1]. DBS has also been indicated for obsessive-compulsive disorder (OCD) [1]. While the precise mechanisms of action remain to be elucidated, DBS alters neuronal function through implantation of devices that produce electrical currents [1]. YouTube is potentially the largest online video platform used worldwide and patients and their caregivers are turning to YouTube for medical education [2,3]. Due to its pervasive nature as ease of accessibility, patients look to YouTube for information regarding their upcoming procedure and watch videos that claim to explain risk factors, complications and alternatives. Therefore, there is a need for the continuous critical assessment of healthcare-related YouTube videos. ⇑ Corresponding author at: Mayo Clinic, Jacksonville, FL 32224, USA. E-mail address:
[email protected] (R.E. Wharen).
Several studies have examined healthcare related YouTube videos and have consistently reported have consistently reported on the lack of accuracy and reliability of these videos [4–8]. Given the ease of access and ever growing number of videos published on YouTube, this is of concern to the medical community as patients deserve educational videos that help them understand their disease process. Despite its frequent use, there is a scarcity of literature discussing the reliability of published videos covering DBS; thus, we aim to evaluate the accuracy and reliability of DBSrelated YouTube videos. 2. Materials and methods 2.1. Search strategy and data collection In May of 2019, YouTube was searched using the following keywords: ‘‘Deep Brain Stimulation”, ‘‘DBS”, ‘‘DBS for Parkinson’s disease”, ‘‘DBS for essential tremor”, and ‘‘DBS for movement disorders”. The first three paged were analyzed using the ‘‘Relevance-Based Ranking” sorting option [9]. This study was
https://doi.org/10.1016/j.jocn.2020.02.015 0967-5868/Ó 2020 Published by Elsevier Ltd.
Please cite this article as: S. Tripathi, K. ReFaey, R. Stein et al., The reliability of Deep Brain Stimulation YouTube videos, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2020.02.015
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S. Tripathi et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
exempt from Institutional Review Board Approval as only publicly accessible data was utilized. 2.2. Inclusion and exclusion criteria The inclusion criteria were adapted from previous studies analyzing similar themes [5,7,8]. Inclusion criteria included: videos had to be uploaded by a university or hospital and in the English language. Only tertiary care centers and university hospitals were included [5,7]. Duplicate and non-relevant videos were removed from further analysis. 2.3. Variables extracted Several parameters were obtained from YouTube including video ID, video name, dates uploaded, viewership, likes, dislikes, and video duration. From this the number of days online, views per day, likes per day, likes per view, and average duration were calculated. 2.4. Scoring System To assess the selected DBS videos, the DISCERN Tool [10] was independently used by four authors. The DISCERN Tool is a validated grading scale/rubric designed to judge the quality of medical articles and videos [5,8]. The DISCERN tool is a 16-question survey that a can be used to grade the quality of medical literature regarding treatment choices for medical conditions, in this case, deep brain stimulation. The tool can be used by readers to determine whether it is a useful resource or by authors/publishers in order to better understand the content that should be included in their articles [5,8]. The DISCERN scaling tool contains 16 questions and is broken down into 3 sections. The first 8 questions focus on the reliability of the information, questions 9–15 examine the details surrounding treatment options presented, and question 16 is an overall quality rating question [10]. Videos with DISCERN greater than 3 are considered ‘‘good” videos. Videos with a grade equal to 3 are considered ‘‘moderate”. Videos with a score less than 3 are considered ‘‘poor”. According to the DISCERN Tool user guide, a threshold of 3 signifies that although videos are of moderate quality, they should be combined with additional sources for comprehensive understanding. In order to establish inter-rater reliability, 10 (24%) videos were graded by all graders and the rest 32 (76%) videos were split among the graders.
3. Results After applying inclusion and exclusion criteria, we identified 42 total videos for further analysis (Table 1). The keyword search: ‘‘DBS” contained mostly non-relevant videos with only one video meeting the inclusion and exclusion criteria and therefore was removed from further analysis; this one video additionally appeared in other keyword searches. We had an inter-rater reliability of 80% in the 10 videos graded by all 4 graders with a maximum of 2-point scoring difference. Of the 42 videos included, only 10 (24%) scored greater than 3 (good score) (Tables 1 and 2). Video upload dates ranged from 2010 to 2019 and there was no difference in time since upload between good and unhelpful videos (Good = 1500 days vs Unhelpful = 1840 days, P = 0.43) (Table 2). The duration of videos was significantly different between the two groups (Good = 25.6 min vs Unhelpful = 3.0 mi n, P = 0.01) (Table 2). The keyword search: ‘‘Deep Brain Stimulation”, had the highest percentage of ‘‘good” videos (32%) and ‘‘DBS for Parkinson’s Disease” was not far behind at 30% (Table 1). Similar to previously published studies, we found that views, likes, and dislikes (average and per day) and days since upload were not significant predictors (Table 2) [5,9]. Example videos from each DISCERN category are shown in Table 3. 4. Discussion The internet has become a leading medium for the general public to receive information that was not easily accessible before [11,12]. At the same time, YouTube has become the largest video sharing software; however, the uploaded videos lack reliability and institutional oversight by experts [2,4,5]. To date, there have been no studies evaluating the reliability and accuracy of the videos related to DBS on YouTube. According to our study, there is a large limitation in the reliability and educational capacity of the available videos on deep brain stimulation (Table 2). Given the number of patients and caregivers who turn to the internet for answers, this becomes a major dilemma in the medical community. In turn, several studies have assessed YouTube videos published by medical institutions and have consistently reported the lack of reliable and useful videos
Table 2 Analysis of variables. Variable
2.5. Statistical analysis Continuous variables were summarized using mean and range; categorical variables using frequencies and percentages. In this study, due to distribution of scores, videos were grouped into DISCERN > 3 (good) or DISCERN < 3 (moderate/poor) for statistical analysis purposes only. As all parameters analyzed are continuous variables, the Wilcoxon Rank Sum Test was used to compare good and moderate/poor videos. Statistical analysis was conducted using R (Version 3.6.0).
Number Duration (mins) Views Upload Days Likes Dislikes Views Per Day Likes Per Day Dislikes Per Day
Video Classification
P-Value
Discern Score > 3 [Mean (SD)]
Discern Score 3 [Mean (SD)]
10 25.6 (22.1) 56,126 (110,405) 1500 (1198) 274 (545) 17 (36) 27 (46) 0.17 (0.2) 0.008 (0.02)
32 3.0 (1.7) 14,682 (31,078) 1840 (987) 62 (113) 3 (7) 8 (13) 0.05 (0.08) 0.002 (0.005)
– 0.01 0.27 0.43 0.25 0.27 0.23 0.14 0.26
The bold values are indicative of the significance.
Table 1 Assessment of videos. Variable
Assessed Rated as helpful
Keyword
Total
Deep Brain Stimulation
DBS for Parkinson’s Disease
DBS for Essential Tremor
DBS for Movement Disorders
28 9 (0.32)
27 8 (0.30)
24 5 (0.21)
21 6 (0.29)
42* 10*(0.24)
Please cite this article as: S. Tripathi, K. ReFaey, R. Stein et al., The reliability of Deep Brain Stimulation YouTube videos, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2020.02.015
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S. Tripathi et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx Table 3 Example video list. YouTube ID
Good Videos (DISCERN > 3) https://youtu.be/cqeWBGvdDsY https://youtu.be/F0fqLgUCIPI Moderate Videos (DISCERN = 3) https://youtu.be/5HR_Szjhrg8 Poor Videos (DISCERN < 3) https://youtu.be/ZDGiIM7RCQI https://youtu.be/Kglg1VffA2U
Video Info Uploader
Grade
Views
Likes
Duration
Upload Date
UCLA Health Barrow Neurological Institute
5 4
793 3730
12 46
32.25 81.04
May 3, 2017 Jul 8, 2018
Mayo Clinic
3
15,288
67
6.51
Mar 18, 2010
Mount Sinai Health System UCLA Health
2 1
3104 175
10 1
3.78 4.03
May 2, 2014 Dec 6, 2018
[4–8,13]. In our current study we found that only 24% of the published videos on deep brain treatment scored above a 3 on the DISCERN scoring scale (consider a ‘‘good” video). Our study is in line with the current literature that reveal that medical institutions publishing more non-reviewed videos may not increase the quality of medical information on YouTube [4,5,8]. Although we believe medical institutions need to publish videos addressing a broad spectrum of health-care related topics on YouTube and other video platforms, they must do so by using evidence-based information and more thorough discussions needed for proper patient education. While, any single video will not be able to fully inform and educate patients and their caregivers, there are two key ideas that videos should include: 1) the content should be reliable and contain information from trusted sources [10]. In order to do this, videos need to ensure the aims are clear and addressed while disclosing the references used. 2) Provide viewers with specific details about treatment choices being presented including the risks, benefits and alternatives to each option [10]. Videos should be unbiased and leave patients with additional resources they can access. Finally, videos can be a unique way to describe quality of life pre and post treatment. If institutions ensure videos address the points outlined above, these videos will score ‘‘high” on the DISCERN scale (DISCERN > 3) and be considered as useful sources of information about treatment choices for patients and their caregivers [10]. We acknowledge limitations in our study. This study examined a small number of videos on YouTube; only 42 videos were analyzed due to the inclusion criteria. This paper only analyzed videos uploaded by universities and/or hospitals as patients are more likely to accept information from these videos as facts [4–8,13]. Including videos uploaded by patients and private practice clinicians may provide varying results. Additionally, we only included videos in the English language. Another consideration is that the YouTube search algorithm provides different results depending on the geographic location of the users IP address. Since this study was performed in the United States of America, the same keyword searches in other nations might lead to different videos and results. 5. Conclusion YouTube has largely impacted the medical field as a way for patients to easily access medical information about diseases and treatment options. Our study, along with other previous studies, have found that most medical videos published on YouTube do not contain evidence-based information. Due to the lack of reliable medical videos on the internet, we encourage medical institutions to create more thorough and fact-based videos on health-care related topics, including DBS, to better inform patients about their conditions and treatment options. Videos should include reliable content from disclosed sources and explain the risks, benefits and alternatives when discussing procedures. Institutions and clin-
icians can use the DISCERN scale as a guideline for producing trustworthy medical videos for the public. Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. Acknowledgments AQH was supported by the Mayo Clinic Professorship and a Clinician Investigator award, and Florida State Department of Health Research Grant, and the Mayo Clinic Graduate School, as well as the NIH (R43CA221490, R01CA200399, R01CA195503, and R01CA216855). Appendix A. Supplementary data Supplementary data to this article can be found online at https://doi.org/10.1016/j.jocn.2020.02.015. References [1] Jakobs M, Fomenko A, Lozano AM, Kiening KL. Cellular, molecular, and clinical mechanisms of action of deep brain stimulation-a systematic review on established indications and outlook on future developments. EMBO Mol Med 2019;11. [2] YouTube. YouTube by the numbers. https://www.youtube.com/yt/ about/press/2019. [3] Alexa. YouTube.com Alexa Traffic Rank. http://www.alexa.com/siteinfo/ youtube.com. [4] Samuel N, Alotaibi NM, Lozano AM. YouTube as a source of information on neurosurgery. World Neurosurg 2017;105:394–8. [5] ReFaey K, Tripathi S, Yoon JW, Justice J, Kerezoudis P, Parney IF, et al. The reliability of YouTube videos in patients education for Glioblastoma Treatment. J Clin Neurosci 2018. [6] MacLeod MG, Hoppe DJ, Simunovic N, Bhandari M, Philippon MJ, Ayeni OR. YouTube as an information source for femoroacetabular impingement: a systematic review of video content. Arthroscopy 2015;31:136–42. [7] Stamelou M, Edwards MJ, Espay AJ, Fung VS, Hallett M, Lang AE, et al. Movement disorders on YouTube–caveat spectator. N Engl J Med 2011;365:1160–1. [8] . World Neurosurg 2019;125:e398–402. https://doi.org/10.1016/j. wneu.2019.01.086. [9] iProspect. iProspect Search Engine User Behaviour Study. http://district4. extension.ifas.ufl.edu/Tech/TechPubs/WhitePaper_2006_ SearchEngineUserBehavior.pdf2006. [10] Charnock D, Shepperd S, Needham G, Gann R. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health 1999;53:105–11. [11] Underhill C, McKeown L. Getting a second opinion: health information and the Internet. Health Rep 2008;19:65–9. [12] Heo J, Chun M, Lee HW, Woo JH. Social media use for cancer education at a community-based cancer center in South Korea. J Cancer Educ 2016. [13] Rossler B, Lahner D, Schebesta K, Chiari A, Plochl W. Medical information on the Internet: quality assessment of lumbar puncture and neuroaxial block techniques on YouTube. Clin Neurol Neurosurg 2012;114:655–8.
Please cite this article as: S. Tripathi, K. ReFaey, R. Stein et al., The reliability of Deep Brain Stimulation YouTube videos, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2020.02.015