SMA treatment videos on YouTube vary as source of solid information

Marisa Wexler MS avatar

by Marisa Wexler MS |

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Three people look at a digital tablet.

Some videos on YouTube, particularly in-depth ones made by healthcare professionals, provide high-quality and reliable information about treatments for spinal muscular atrophy (SMA), a new study highlights.

But many of the examined videos concerning SMA treatments are neither high quality nor reliable, the researchers found, adding importance to identifying factors that could help guide their selection.

“It is necessary to consider how SMA patients and caregivers can choose trusted sources with reliable information on YouTube,” they wrote, given that “people are increasingly using the Internet to obtain medical information.”

The study, “Usefulness of YouTube in Sharing Information about New Gene Therapy for Spinal Muscular Atrophy: A Content Analysis,” was published in Healthcare.

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Most of videos evaluated featured healthcare experts

Since 2016, three disease-modifying treatments have been approved in the U.S. for SMA: Spinraza (nusinersen), administered via injection into the spine canal every four months; Evrysdi (risdiplam), a daily oral therapy; and Zolgensma (onasemnogene abeparvovec-xioi), a one-time gene therapy.

All of these medicines work by boosting levels of the SMN protein, which is found in abnormally low levels in SMA patients due to mutations in the SMN1 gene.

The internet has become a valuable source of information for many people, but it also has served as a vector for the spread of misinformation. In this study, scientists in Korea conducted an analysis of videos on YouTube that discussed treatments for SMA.

“This study aimed to objectively assess the quality, reliability, and patient-friendliness of videos regarding novel SMA treatments and to determine which YouTube videos best assist patients in comprehending novel SMA treatments,” they wrote.

Because SMA is a rare disease, the scientists expected that available resources would come mainly from healthcare providers and be of high quality.

“We expected that the quality of medical knowledge would be good for specialized treatment for rare diseases because that could be mainly provided by medical professionals,” they wrote.

The team identified 99 videos that ranked relatively highly on YouTube when the researchers searched for the names of each therapy. Based on their nature, the videos were assigned to one of four groups: non-expert videos (34 videos; “personal experience” videos were excluded), those with medical experts engaged in “peer exchange” (11), an expert speaking (24), and an expert speaking while showing infographics to help explain information given (30).

For each video, the reliability and quality of the information was evaluated using standardized five-point scales.

With the help of experts in neuromuscular diseases, the researchers also developed a novel score, called the Information Delivery Capability (IDC), specifically to assess how well information about the existing SMA treatments was conveyed.

In assessments of reliability and quality, average scores were around three out of five, with similar results for each of the three medicines assessed. Scores were around four in the ICD scale, which ranged from zero to eight.

Scores highest for SMA treatment videos by experts with infographics

Researchers noted a great deal of variability among the videos — some, especially videos from healthcare experts showing mainly infographic supplements, were rated as high quality. Others, particularly videos from non-experts and those from experts showing only a person talking, scored poorly.

“Unfortunately, we found that the quality and reliability of the videos about the new treatment for SMA were quite heterogeneous,” the researchers wrote, and study results “show that YouTube is not a good tool for delivering medical information regardless of disease rarity.”

Nonetheless, they highlighted that some of the videos were a high-quality resource. The challenge, the scientists stressed, will be finding ways to guide patients toward resources offering high quality and accurate information.

“As YouTube is already a dominant media platform, there is a high possibility that the public will obtain new information about novel therapeutics through YouTube,” the team concluded. “It is necessary to consider how the public can choose good videos, and this study may serve as a springboard for future research.”

The post SMA treatment videos on YouTube vary as source of solid information appeared first on SMA News Today.