The benefit of online education in twin-to-twin transfusion syndrome: could it be an eye-opening platform?. Perinatal Journal 2021;29(2):126-132
- Langone Health Perlmutter Cancer Center Preclinical Therapeutics Program, New York University, New York City, USA
- Department of Obstetrics and Gynecology, Meram School of Medicine, Necmettin Erbakan University, Konya, Turkey
Selim Mısırlıoğlu, Langone Health Perlmutter Cancer Center Preclinical Therapeutics Program, New York University, New York City, USA, [email protected]
Manuscript Received: June 08, 2021
Manuscript Accepted: July 30, 2021
Earlyview Date: July 30, 2021
Publication date: September 10, 2021
Conflicts of Interest
Funding: This work did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Compliance with Ethical Standards: The authors stated that the standards regarding research and publication ethics, the Personal Data Protection Law and the copyright regulations applicable to intellectual and artistic works are complied with and there is no conflict of interest.
This study intends to objectively review the quality and reliability of laser photocoagulation for twin-to-twin transfusion syndrome (TTTS) videos on the YouTube® platform in terms of integrity and educational value for patients and medical professionals.
YouTube® (http://www.youtube.com) search was performed for videos pertaining to fetal laser surgery in TTTS, using the terms fetoscopic laser ablation or/and fetoscopic laser surgery or/and fetoscopic laser twin-to-twin transfusion syndrome. A total of 42 videos were analyzed. Video sources were categorized as follows: INDIVIDUAL, ACADEMIC INSTITUTION, and COMMERCIAL. Source of videos, time since upload (days), total duration of videos (seconds), total views, and likes were recorded. Video power index (VPI) was used to report video popularity. Educational quality and integrity were reviewed using the DISCERN, JAMA, GQS, and a novel YouTube® TTTS content - integrity score (TTTS-IS).
The mean duration was 336.43±351.8 seconds, and the total views were 172.076±82.6. Surgical risks were stated only in 33% of videos, and the success rate of surgery was mentioned in 35%. In all groups, the median value of DISCERN scores is 32.50, 42, and 26, which refers to poor, fair, and very poor quality, respectively. Videos uploaded by an academic institution had statistically insignificant DISCERN and JAMA scores along with lower GQS and TTTS-IS (p>0.05). In regards to the video source, academic institutions were prominent (47.6%), and the most popularized videos were conducted by commercial websites and individuals related to VPI. The VPI was poorly correlated with all scoring systems. Negative correlations were detected between total views and JAMA scores and positive correlations were determined with the GQS and TTTS-IS.
Despite having VPI score highly in each group, YouTube® provides low-quality videos regarding fetal laser surgery of TTTS. There is an urgent need to regulate the context of those videos according to medical guidelines.
Twin-to-twin transfusion syndrome, fetal laser photocoagulation, online education.
Twin-to-twin transfusion syndrome (TTTS) impacts approximately 15% of every monochorionic diamniotic (MCDA) twin pregnancies.[1,2] It is defined by sonography detecting polyhydramnios in the recipient twin and oligohydramnios in the donor twin. Based on the Quintero criteria, stages III and IV are the advanced stages which require interventional procedures. Briefly, stage III refers critically abnormal Doppler waveforms, and stage IV is described as hydrops fetalis in recipient twins.[4,5] The prognosis for untreated severe twin-to-twin transfusion syndrome is a disastrous condition along with approximately 90 percent perinatal mortality and morbidity rates as well as high rates of neurologic complications.[6,7] As a result, various strategies have been developed, including selective fetal reduction, serial amnioreduction, and fetal laser surgery (FLS) in current treatment options.[2,5]
Current management approaches defined for TTTS are categorized into two parts: (1) Conservational methods (expectant management), (2) interventional methods (amnioreduction, septostomy, laser photocoagulation, selective fetal reduction). Today, laser photocoagulation of placental anastomoses is accepted by most perinatologists as the prime available approach for all stages except TTTS stage I in ongoing pregnancies less than 26 weeks.[1,2,6] Apart from this, procedure-related fetal loss and severe neurological disability stand out as the main complication.[3,7] Comprehensive consulting should be provided to the pregnant women complicated by TTTS, including the natural progress of the disease, management plans, and risks along with benefits.
Fetoscopic laser surgery, also known as laser photocoagulation, is a unique procedure that aims to destroy placental vascular anastomoses responsible for intertwining blood shunting.[2,7,8] There is robust evidence that laser photocoagulation of placental anastomoses allows interruption of these shunting and improves neonatal survival and morbidity.[5,7] On the contrary, fetal interventions extend no direct medical advantages to the mother; therefore, maternal risks should be insignificant and tolerable related to ethical perspective.
Due to the complex nature of TTTS and limited treatment options, patients seek alternative information lines to mitigate this detrimental disease. Information concerning the safety of fetal surgery is essential for counseling and informed decision-making; nevertheless, robust data on maternal outcomes of fetal surgery are not satisfactory. Consequently, social networking platforms and other communication channels can play a crucial role in educating patients and addressing accessible resources.[9–15]
YouTubeTM (YouTube®, San Bruno, CA, USA, 2005) is a popular online video sharing site with more than 2 billion users every month and over a billion hours of video views on a daily basis. It broadcasts in 80 different languages in more than 100 countries. More than 70% of YouTube® views come from mobile devices; the number of YouTube users is almost one-third of the all Internet users. Thus, the popularity of YouTube has reached an astonishing point among medical professionals and patients who have begun to opt for this easily accessible platform.
Given the tremendous popularity of YouTube, many patients state that information from the Internet encourages them to communicate with their doctors and helps them make health-related decisions. At the same time, studies show that almost half of them consult Internet resources before their physicians on health-related questions.[12,18–20] Consequently, physicians should provide counseling services by being aware of the quality and accuracy of their patients’ information online.
Due to the increasing popularity of social media, there is an urgent need to validate the content of those interactive technologies. This study intends to evaluate the quality and reliability of fetoscopic laser treatment of TTTS videos on the YouTube platform regarding integrity, complexity, and educational value.
On January 31st, 2020, a YouTube (http://www. youtube.com) search was performed for videos pertaining to fetal laser surgery in TTTS, using the terms fetoscopic laser ablation or/and fetoscopic laser surgery or/and fetoscopic laser twin-to-twin transfusion syndrome. Videos are classified using standard YouTube filters. Duplicates, non-English language, no presence of narratives, irrelevant contents that do not include words of ‘fetal laser surgery’ and ‘TTTS’ during the record were excluded from further analysis (Fig. 1).
A total of 237 videos were blindly and independently analyzed by two experienced obstetricians and gynecologists (S.M. and M.M.I.), and the average of the scores given by them was recorded.
Videos were categorized into 3 groups related to upload sources: individual/non-profit organization (Group A, n=12), academic institution (Group B, n=20), and commercial (Group C, n=10). Nine out of 42 (21%) videos targeted medical professionals as an audience.
The quality of the data was appraised with the DISCERN score, the Global Quality Scale (GQS), and the Journal of the American Medical Association (JAMA) score.[15,21,22] The DISCERN includes sixteen questions scored from 1 to 5 and total scores ranging between 6 to 80, with a higher score reflective of superior quality. The GQS uses a 5-point scale (1 to 5) to rate the overall quality of the video, based on the value of the information and how useful the reviewer thought the particular video would be to a patient (Table 1). One point was scored to represent low quality (most of the information is missing, not useful for viewers at all) and 5 points to high quality (beneficial for viewers). The JAMA score assesses the character of information regarding authorship, attribution, disclosure, and currency. One point is granted for available criteria, outcoming in scores from 0 to 4, with a higher score indicating superior quality. However, there is no specific scoring system based on fetal laser surgery in TTTS to evaluate the quality of videos. Furthermore, there is no tool to assess the diagnostic, educational, and surgical information in particular. On this occasion, we have developed a new scoring system, YouTube® TTTS-video content integrity score (TTTS-IS), which evaluates the educational quality and reliability of video content for fetal laser surgery based on standardized criteria; sufficient technical information about the procedure, patient selection criteria, alternative treatment options, risks of the procedure, surgical success rates, and information with regard to potential complications. (Table 2). Objective measurement criteria were created by introducing a scoring system of 1 for each standard, with a total score of 10. TTTS-IS was categorized as excellent (9–10), good (7–8), fair (5–6), poor (3–4), and very poor (1–2).
Video characteristics including duration of time since uploading (days), total length in seconds, total amount of views, likes, dislikes, number of comments, and VPI (like x 100 / [like + dislike]) were recorded.
This study was exempted from IRB (Institutional Review Board) approval, as it only included the use of open access data for all. Therefore, the current study does not require the informed consent of participants.
Statistical calculations were carried out using SPSS version 25 (IBM Corp., Armonk, NY, USA). Categorical values were indicated as the frequency, whereas continuous data were given as the mean, median, standard deviation, and interquartile range. The Shapiro-Wilk test was chosen to evaluate the normal sequence and Levene’s test for variance homogeneity. To assess the relationships between quantitative variables, the Spearman correlation test was used. Quantitative variables were compared using the Mann-Whitney U test for two groups and the Kruskal-Wallis with the Dunn-Bonferroni post-hoc test to the intergroup analysis of non-normally distributed data. Inter-observer agreement was determined with Cohen’s kappa score (£0 no agreement, 0.01–0.20 slightly, 0.21–0.40 fair, 0.41–0.60 moderate, 0.61–0.80 substantial, 0.81–1.00 excellent). Correlation was categorized as poor (0.00–0.20), fair (0.21–0.40), moderate (0.41–0.60), good (0.61–0.80), or excellent (0.81–1.00). The threshold for significance was accepted p<0.05.
Regarding fetal laser surgery in TTTS, a total of 42 videos were evaluated in the final analysis. According to the DISCERN score, 8 (19%) videos were excellent, 3 (7%) were good, 6 (14%) were fair, 12 (29%) were poor, and 13 (31%) very poor. Based on the TTTS-IS scores, 3 (7%) videos were excellent, 3 (7%) videos were good, 3 (7%) videos were fair, 8 (19%) videos were poor, and 25 (60%) videos were poor quality. The vast majority of videos were 720p resolution (31%) (median value 720p, range 240p–1080p). The oldest video included was uploaded in 2009.
The par of total views per video was 172.076± 82.6, with a total overall view count of 7,227,221. The average number of likes and dislikes per video is 341.55 and 70, respectively. The mean total duration of videos in seconds was 336.43. A detailed descriptive analysis of 42 videos is shown in Table 3.
Due to the Global Quality Scale, the average score was 1.9524 out of 5. In all groups (A, B, C), the median value of DISCERN scores is 32.50, 42, and 26, which refers to poor, fair, and very poor quality in order. DISCERN scores between videos uploaded by Group A, B, and C were statistically insignificant (p=0.115). Moreover, no significant difference was detected among those groups according to the TTTS-IS score (p=0.944). A comparison of scores is presented in Table 4.
The DISCERN positively correlated with JAMA (p<0.001), whereas negatively correlated with GQS and TTTS-IS (p=0.028 and p=0.093, respectively). Furthermore, a remarkable association emerged between TTTS-IS and GQS (rho= 0.866, p<0.001). Even though there were negative correlations of VPI, total duration of videos, and total views with DISCERN and JAMA scores, a positive correlation was detected with GQS and TTTS-IS scores. Table 5 summarizes the correlation among DISCERN, JAMA, GQS, VPI, and TTTS-IS scoring systems.
The inter-observer reliability (Kappa coefficient of agreement) was found at 0.89 (p<0.001) for the DISCERN scoring and 0.96 (p<0.0001) for the TTTS-IS. External validation was not formally assessed as there is no accepted criterion standard for YouTube video quality.
This study intends to compare the educational and informative value of YouTube on laser photocoagulation, the current treatment option in TTTS, according to the well-known scoring systems in the literature. Our findings indicate no significant difference between the groups despite the use of various scoring scales. Moreover, we found a statistically significant correlation between a novel scoring system (TTTS-IS) developed by us and a well-known classical scoring system (GQS) widely accepted worldwide. This is the first study to evaluate the role of YouTube, video-based web platform, in surgical obstetrics and introduce a new scoring system that might provide a novel perspective on the patient-physician relationship.
Given the abovementioned criteria, the reliability and quality of videos on a broad-based platform such as YouTube that can provide content in many languages will be tremendously important shortly to improve communication between patients and medical professionals.[9,18,23–25] According to the research by Lagan et al., 83% of pregnant women mentioned the importance of Internet-based information as one of their decision-making processes. When Yuksel et al. analyzed the health concerns of pregnant women and their difficulties in obtaining accurate information during the COVID-19 pandemic, they showed that videos with incorrect content could cause more concern. In our study, the majority of videos were uploaded by academic institutions followed by personal users; however, our findings show that the quality of the fetal laser videos of TTTS was substantially below average, and the educational content was profoundly lack of scientific facts, including patient selection criteria, surgical risks, alternative options and so forth. Accordingly, surgical risks were stated only in 33 percent of videos, and the success rate of surgery was pointed at 35 percent of them. Furthermore, Stage classification, which is still the most up-to-date parameter in determining treatment, was mentioned in 37 percent of them.
For this reason, the necessity of information provided on online platforms to be clear, informative, and scientifically proven comes to the fore in the cybernetic era.
Many studies have shown that high-quality videos take a longer duration; nevertheless, our research found that the DISCERN and JAMA scores, which are the quality indexes, are also lower for videos that last longer.[10,26] VPI score is another parameter to evaluate the popularity of videos. The median value was significantly greater for videos in which the video upload source was categorized as an academic institution and commercial.[17,27] Notwithstanding, analysis of these data points out a negative or poor correlation between VPI and other scoring systems. This means lower quality and reliability among YouTube videos. Therefore, this situation can lead to detrimental consequences, especially in the field of obstetric.
According to actual statistics, 95% of the global Internet population watches YouTube. Unfortunately, the absence of a control mechanism triggers an utmost uncertainty regarding the reliability, accuracy, and appropriateness of those video sources.[17,23] Our newly developed scoring system (TTTS-IS) shows a negative correlation with VPI, whereas it indicates a significant correlation with a total number of views (rho=0.903, p<0.001). As a matter of fact, laser photocoagulation can only be performed in the tertiary centers for a robust infrastructure. In doing so, it could be seen as an expected situation that the videos coming from these centers have a high viewing rate regardless of the quality.
Until now, the quality and value of videos addressing fetal laser surgery for TTTS as a patient-centered resource have not been explored in the literature. Apart from this specific point, indeed, there are some limitations in our study. First, the major concern is the dynamic structure of YouTube which emerges totally different results depending on the time-based search. Second, content quality scoring could not be assessed standardized due to a lack of consensus among Internet-based videos.
Given the above, the content of videos should be independently evaluated and standardized by international professional organizations while increasing the number of videos uploaded by academic institutions on social media sites such as YouTube. Incomplete or inaccurate information may expose patients to unscientific treatments and cause severe damage to the physician-patient relationship. Therefore, there is an imperative requirement to critically analyze the quality of YouTube’s health-related videos in the field of high-risk pregnancies.
- Gheorghe CP, Boring N, Mann L, Donepudi R, Lopez SM, Chauhan SP, et al. Neonatal outcomes and maternal characteristics in monochorionic diamniotic twin pregnancies: uncomplicated versus twin-to-twin transfusion syndrome survivors after fetoscopic laser surgery. Fetal Diagn Ther 2020;47:165–70. [PubMed] [CrossRef]
- Senat M-V, Deprest J, Boulvain M, Paupe A, Winer N, Ville Y. Endoscopic laser surgery versus serial amnioreduction for severe twin-to-twin transfusion syndrome. N Engl J Med 2004;351:136–44. [PubMed] [CrossRef]
- Baxi LV, Walsh CA. Monoamniotic twins in contemporary practice: a single-center study of perinatal outcomes. J Matern Fetal Neonatal Med 2010;23:506–10. [PubMed] [CrossRef]
- Quintero RA, Morales WJ, Allen MH, Bornick PW, Johnson PK, Kruger M. Staging of twin-twin transfusion syndrome. J Perinatol 1999;19:550–5. [PubMed] [CrossRef]
- Wagner MM, Lopriore E, Klumper FJ, Oepkes D, Vandenbussche FP, Middeldorp JM. Short- and long-term outcome in stage 1 twin-to-twin transfusion syndrome treated with laser surgery compared with conservative management. Am J Obstet Gynecol 2009;201:286.e1–6. [PubMed] [CrossRef]
- Sacco A, Van der Veeken L, Bagshaw E, Ferguson C, Van Mieghem T, David AL, et al. Maternal complications following open and fetoscopic fetal surgery: a systematic review and meta-analysis. Prenat Diagn 2019;39:251–68. [PubMed] [CrossRef]
- Simpson LL. Twin-twin transfusion syndrome. Am J Obstet Gynecol 2013;208:3–18. [PubMed] [CrossRef]
- Wilson RD, Johnson A, Ryan G. Current controversies in prenatal diagnosis 2: should laser ablation of placental anastomoses be used in all cases of twin to twin transfusion? Prenat Diagn 2009;29:6–10. [PubMed] [CrossRef]
- Baker DM, Marshall JH, Lee MJ, Jones GL, Brown SR, Lobo AJ. YouTube® as a source of information for patients considering surgery for ulcerative colitis. J Surg Res 2017;220:133–8. [PubMed] [CrossRef]
- Menziletoglu D, Guler AY, Isik BK. Are YouTube® videos related to dental implant useful for patient education? J Stomatol Oral Maxillofac Surg 2020;121:661–4. [PubMed] [CrossRef]
- Kuçuk B, Sirakaya E. An analysis of YouTube® videos as educational resources for patients about refractive surgery. Cornea 2020;39:491–4. [PubMed] [CrossRef]
- Kunze KN, Krivicich LM, Verma NN, Chahla J. Quality of online video resources concerning patient education for the meniscus: a YouTube® -based quality-control study. Arthroscopy 2020;36:233–8. [PubMed] [CrossRef]
- Wong M, Desai B, Bautista M, Kwon O, Kolodychuk N, Chimento G. YouTube® is a poor source of patient information for knee arthroplasty and knee osteoarthritis. Arthroplast Today 2019;5:78–82. [PubMed] [CrossRef]
- Ho M, Stothers L, Lazare D, Tsang B, Macnab A. Evaluation of educational content of YouTube® videos relating to neurogenic bladder and intermittent catheterization. Can Urol Assoc J 2015;9:320–54. [PubMed] [CrossRef]
- Singh AG, Singh S, Singh PP. YouTube® for information on rheumatoid arthritis – a wakeup call? J Rheumatol 2012;39:899–903. [PubMed] [CrossRef]
- YouTube® by the numbers. [Internet] Available from: https:// www.statista.com
- Celik H, Polat O, Ozcan C, Camur S, Kilinc BE, Uzun M. Assessment of the quality and reliability of the information on rotator cuff repair on YouTube®. Orthop Traumatol Surg Res 2020;106:31–4. [PubMed] [CrossRef]
- Yuksel B, Cakmak K. Healthcare information on YouTube®: pregnancy and COVID-19. Int J Gynaecol Obstet 2020;150:189–93. [PubMed] [CrossRef]
- Orbatu D, Yildirim Karaca S, Alaygut D, Karaca I. Educational features of YouTube® videos depicting breastfeeding: quality, utility, and reliability analysis. Breastfeed Med 2021;16:635–9. [PubMed] [CrossRef]
- Basch CH, Hillyer GC, Berdnik A, Basch CE. YouTube®™ videos related to human papillomavirus: the need for professional communication. Int J Adolesc Med Health 2016;30:20150122. [PubMed] [CrossRef]
- 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. [PubMed] [CrossRef]
- Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewor – Let the reader and viewer beware. JAMA 1997;277:1244–5. [PubMed] [CrossRef]
- Camm CF, Russell E, Ji Xu A, Rajappan K. Does YouTube® provide high-quality resources for patient education on atrial fibrillation ablation? Int J Cardiol 2018;272:189–93. [PubMed] [CrossRef]
- Lagan BM, Sinclair M, Kernohan WG. Internet use in pregnancy informs women’s decision making: a web-based survey. Birth 2010;37:106–15. [PubMed] [CrossRef]
- Madathil KC, Rivera-Rodriguez AJ, Greenstein JS, Gramopadhye AK. Healthcare information on YouTube®: a systematic review. Health Informatics J 2015;21:173–94. [PubMed] [CrossRef]
- Biggs TC, Bird JH, Harries PG, Salib RJ. YouTube® as a source of information on rhinosinusitis: the good, the bad and the ugly. J Laryngol Otol 2013;127:749–54. [PubMed] [CrossRef]
- Ferhatoglu MF, Kartal A, Ekici U, Gurkan A. Evaluation of the reliability, utility, and quality of the information in sleeve gastrectomy videos shared on open access video sharing platform YouTube®. Obes Surg 2019;29:1477–84. [PubMed] [CrossRef]
Study flow diagram.
Global Quality Scale (GQS).
YouTube® TTTS-video content integrity score (TTTS-IS).
Comparison of scores among the video source groups.
Correlations of different scoring systems.