Quality of English-language videos on YouTube as a source of information on systemic lupus erythematosus

Abstract

Background: Many patients turn to online platforms to obtain healthcare information, but the quality and accuracy of the information is largely unknown. The objective of this study was to evaluate the reliability and quality of the most viewed English-language YouTube videos on systemic lupus erythematosus (SLE).

Methods: YouTube was searched using keywords "systemic lupus erythematosus" and videos were categorized as useful information, misleading information, useful patient opinion, and misleading patient opinion. Reliability was scored using a modified 5-point DISCERN tool (where higher scores represent greater reliability), while quality was rated using the 5-point Global Quality Scale (GQS). Content covered included epidemiology, pathogenesis, clinical features, diagnosis and treatment of SLE.

Results: Of the top 183 relevant videos, 124 (67.8%) were classified as useful information, 21 (11.5%) as misleading information, 29 (15.8%) as useful patient opinion, 9 (4.9%) as misleading patient opinion. Useful information videos were primarily produced by professionals (62.1%), with videos being of greater reliability and quality than other groups. However, video characteristics collected were largely comparable across all groups. The majority (68.9%) of the videos addressed patients.

Conclusion: Our findings highlight an abundance of YouTube videos with useful information on SLE, that are mostly reliable and of high quality. However, in order to effectively educate patients, pitfalls such as misleading content, falsely elevated video characteristics and non-professional sources need to be made known to patients. As part of holistic care, healthcare professionals should advise patients to seek information from reputed sources.

Keywords: YouTube; education; misleading; patient education; systemic lupus erythematosus.