Usefulness of YouTube in Sharing Information about New Gene Therapy for Spinal Muscular Atrophy: A Content Analysis

This study aimed to objectively assess YouTube videos' quality, reliability, and information delivery capability regarding novel spinal muscular atrophy treatments. Using the keywords "nusinersen", "spinraza", "ridisplam", "evrysdi", "onasemnogene ab...

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Bibliographic Details
Published in:Healthcare (Basel) 2023-01, Vol.11 (1), p.147
Main Authors: Kim, Kyeong Yeol, Jang, Chan Woong, Chung, Seok Young, Kim, Myungsang, Cho, Sung-Rae, Cho, Han Eol
Format: Article
Language:English
Subjects:
Care and treatment
Drug dosages
Education
Evaluation
FDA approval
Gene therapy
genetic therapy
Information management
Information sources
Internet videos
Methods
muscular atrophy
Neuromuscular diseases
Online services
Patients
Proteins
social media
spinal
Spinal muscular atrophy
Study and teaching
Technology application
YouTube
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Summary:This study aimed to objectively assess YouTube videos' quality, reliability, and information delivery capability regarding novel spinal muscular atrophy treatments. Using the keywords "nusinersen", "spinraza", "ridisplam", "evrysdi", "onasemnogene abeparvovec", and "zolgensma", we were able to retrieve and screen 360 videos before settling on a final sample of 99 on 25 September 2022. Then, two independent raters used the mDISCERN and GQS instruments to evaluate the videos' reliability and quality and the Information Delivery Capability (IDC) score to assess the videos' accuracy and patient-friendliness. The quality, reliability, and information delivery capability of the videos about the new treatment for SMA were quite heterogeneous, with an average mDISCERN, GQS, and IDC score of 3.172 ± 0.899, 2.980 ± 1.025, and 4.141 ± 1.747, respectively. In-depth analysis showed that healthcare expert videos that explained contents while showing infographic supplements had good quality, reliability, and information delivery capability. As YouTube is already a dominant media platform, the public may obtain new information about novel therapeutics for SMA through YouTube. It is necessary to consider how SMA patients and caregivers can choose trusted sources with reliable information on YouTube, and our results can provide clues. Additionally, experts should strive to provide more accurate, reliable, and patient-oriented videos.
ISSN:2227-9032
2227-9032
DOI:10.3390/healthcare11010147