A new study aimed to assess the quality and reliability of videos uploaded to YouTube that provide information around spinal muscular atrophy (SMA).
Researchers found that YouTube videos used to learn about spinal muscular atrophy (SMA) that included infographics and explained the contents were reliable and of better quality compared with other forms of YouTube videos about SMA, according to new study findings published in Healthcare. As a result, the researchers believe that experts should focus their attention on providing videos that are more accurate and oriented toward patients.
SMA is one of the most common neuromuscular disorders, with an incidence of 1 in 10,000. New treatments have been developed in recent years, but information on these treatments is hard to come by, with many turning to YouTube for medical information. This study aimed to assess the quality, relatiability, and friendliness for patients of videos that provide context for SMA.
A search was conducted on September 25, 2022. Nusinersen, onasemnogene abeparvovec, and risdiplam were the 3 FDA-approved treatments for SMA prior to 2022 and therefore were among the keywords used to find videos pertaining to SMA. Videos were excluded if there were duplications, were not directly related to SMA gene therapy, contained personal experience, were not in English, or were advertisements.
The basic characteristics of the videos were collected: title, uploader, length, and total views, likes, and comments. Videos were separated into 4 categories: nonexpert videos in Group 1, health care expert videos with peer exchange in Group 2, health care expert videos showing the speaker’s face in Group 3, and health care expert videos showing infographic supplements in Group 4.
The 5-point mDISCERN tool was used to evaluate video reliability, which included questions such as, “Are the aims clear and achieved?” and “Are areas of uncertainty mentioned?” Assessing the quality of the video content was measured using the Global Quality Scale (GQS). Scores of 1 to 2 indicated low quality, 3 indicated moderate quality, and 4 to 5 indicated high quality.
The Information Delivery Capability (IDC) score was developed to evaluate accuracy and friendliness to patients. The IDC contained 7 questions, in which 1 point was awarded if an explanation was provided and 0 when none was provided. For the fifth question, 2 points were awarded if the drug administration cycle and route were explained and 1 point was awarded if any explanation was given; the highest score a video could receive was 8 points.
There were 99 videos included in the analysis, with a median (IQR) upload time of 775 (526-1171) days, median views of 298 (164.5-1138), median likes of 6.5 (0-21.5), and median comments of 0 (0-2.5). The median (IQR) length of the videos was 335 (227-486) seconds. The mean (SD) score of mDISCERN was 3.172 (0.899), the mean (SD) score on the GQS was 2.980 (1.025), and the mean (SD) score of the IDC was 4.141 (1.747).
Videos about nusinersen had a mean mDISCERN score of 3.15 compared with 3.32 for videos about onasemnogene aberparvovec and 3.00 for videos about risdiplam. The mean GQS scores were 3.12, 3.14, and 2.61, respectively. The IDC score was 3.74, 4.73, and 3.86, respectively. GQS and mDISCERN scores did not differ by group.
The mean GQS for groups 1, 2, 3, and 4 were 2.47, 2.45, 2.67, and 4.00, respectively; the mean mDISCERN scores were 3.50, 3.91, 3.38, and 5.57; and the mean IDC scores were 3.50, 3.91, 3.38, and 5.57.
There were some limitations to this study. There may have been a limited number of videos for this analysis because of the short amount of time that the treatments had been approved, and not all videos about SMA treatment were included.
The researchers concluded that YouTube is generally “not a good tool for delivering medical information regardless of disease rarity,” outside of specific videos that explained and demonstrated infographics for the benefit of their viewers. Researchers believe that learning how patients select videos to watch is necessary for future consideration, as videos with infographics had better quality and reliability compared with other types of videos.
Kim KY, Jang CW, Chung SY, Kim M, Cho SR, Cho HE. Usefulness of YouTube in sharing information about new gene therapy for spinal muscular atrophy: a content analysis. Healthcare. 2023;11(1):147. doi:10.3390/healthcare11010147