Patients who want to take a more active role in decision-making about their treatment are increasingly using the internet to seek information about their disease [8]. Achieving the right information from reliable sources increases patient satisfaction and can improve treatment results [9–11]. However, in our assessment of the quality of information presented in YouTube videos on FECD, we found that these videos provided only moderate-quality information about the disease.
Similar to our study, studies evaluating YouTube videos in the literature have reported that video content was generally of poor-moderate quality. In a YouTube study related to strabismus, Mangan et al. reported the mean DISCERN, JAMA, and GQS scores as 42.2 ± 15.3, 1.9 ± 1.2 and 2.7 ± 1.1, respectively and concluded that these videos provided only moderate-quality information about strabismus [3]. In a study by Küçük et al., in which Youtube videos were evaluated as an educational resource in refractive surgery, the DISCERN, JAMA and GQS scores were determined to be 33.25 ± 15.34 (poor), 0.74 ± 0.82 and 1.74 ± 0.81, respectively, and the authors reported that YouTube videos did not adequately inform patients about surgical procedures [12]. Sahin et al. found that 64% of YouTube videos on retinopathy of prematurity were useful, Gutrie et al. reported that 32% of videos on retinitis pigmentosa were useful, and Hickman et al. observed that only 23% of videos on neurological eye movements were of excellent quality [13–15].
In our study, no significant difference was found between the video upload sources in terms of the DISCERN, JAMA benchmark, GQS and VPI scores. Unlike other studies, there were no patient-uploaded videos, and independent users had posted only 2.8% of the evaluated videos.3 Many studies have shown that the quality and reliability of videos uploaded by physicians are higher than those uploaded by non-physicians, but the former have a lower viewing rate [16]. In our study, no difference was found between the video sources in terms of the number of views.
When evaluated according to video content, there was no difference between the videos providing information about the disease and those discussing surgical techniques in terms of the DISCERN, JAMA, GQS and VPI values. In the videos presenting patient experience, the DISCERN, JAMA and GQS scores were lower compared to the videos discussing surgical techniques and VPI was lower than two groups. Unlike other studies, the popularity of the videos on patient experience was found to be lower [3, 17, 18]. In these videos, it is not possible to distinguish whether the patients describe their own experience and thoughts or they share this information for a fee for advertisement purposes. Our findings indicate that patients prefer more informative, accurate and reliable sources about FECD.
In our study, we did not separate the videos as useful or misleading, but there was no inaccurate, misleading, or non-evidence-based information in the FECD-related videos. One reason for the low DISCERN, JAMA and GQS scores is that these parameters alone may not actually be sufficient to evaluate YouTube videos. The DISCERN questionnaire was developed in recognition of the need for a general set of quality criteria for written consumer health information [19].The JAMA benchmark was also created to assess online sources for the delivery of medical information [20]. Videos differ from web pages in several aspects. First, most videos focus on a single topic, such as genetics, symptoms, diagnostic methods, and treatment techniques rather than covering all aspects of the disease, and therefore they receive low scores in quality and reliability evaluations. Second, YouTube videos do not mention references or sources used for content, they do not declare the presence of any conflict of interest, and they are not regularly updated in contrast to online websites.
There are some limitations to the current study. The primary limitation of our study was analyzing only the first 100 videos on YouTube upon searching the keyword ‘Fuch’s endothelial corneal dystrophy’. A single time point was used to assess the quality of the videos, but search results may vary over time. In addition, the current study investigated only the videos in English language. Although this makes it hard to generalize the results of the study, English is accepted as the prevailing language among internet users. Lastly, we did not use a form to record the evaluated parameters for the FECD-related videos.
In conclusion, this was the first study to investigate the quality of FECD videos on a popular video-sharing site. The quality of information in YouTube videos on FECD was determined to be moderate. There was no difference in the quality and reliability of the videos according to the upload source or video content except patient experience. Ensuring that there are more videos providing healthcare information created by healthcare professionals and refined by a professional review process can increase public health awareness, and the internet can be a useful tool for delivering this high-quality and reliable information to the public.