The origin of YouTube videos on hereditary angioedema matters

Hereditary angioedema (HAE) is a rare, potentially life-threatening condition that requires accessible and reliable information. YouTube has emerged as a significant source of health-related content, offering valuable insights while posing the risk of misinformation that warrants caution among users. The aim of this study was to evaluate the popularity, reliability, understandability, actionability, and overall quality of YouTube videos related to HAE.

A search was conducted on YouTube using the term "hereditary angioedema." Videos were categorized based on their origin (health or nonhealth) and content type (medical professional education (MPE), patient education (PE), patient experience, or awareness). The quality, reliability, understandability, and actionability of the videos were assessed via the Global Quality Scale (GQS), the Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V), and the Quality Criteria for Consumer Health Information (DISCERN) tool. Three independent allergists evaluated the videos.

Out of 135 reviewed videos, 111 met the inclusion criteria. The health group presented significantly higher scores than did the nonhealth group in several metrics: PEMAT-A/V understandability (83, IQR: 56-92, p = 0.001), total DISCERN score (37, IQR: 3-45, p < 0.001), reliability (23, IQR: 19-26, p < 0.001), treatment (15, IQR: 8-21, p = 0.007), and modified DISCERN score (3, IQR: 2-4, p = 0.002). Health videos were uploaded more recently (p = 0.006), while awareness videos tended to be older than more recent MPE videos (p = 0.002). The MPE videos had the longest duration, whereas the awareness videos had the shortest duration (p < 0.001). Video quality scores, assessed via the GQS, were higher in both the MPE and PE groups (scores: 3, 4, and 5; p = 0.005). Compared with the other groups, the MPE group also had significantly higher PEMAT-A/V understandability scores (91, IQR: 70.75-92, p < 0.001), total DISCERN scores (40, IQR: 30.75-49.5, p < 0.001), reliability scores (24, IQR: 21-27.25, p < 0.001), and overall scores for moderate to high quality (83, 74.8%, p = 0.002).

YouTube videos on HAE uploaded by health care professionals generally offer higher-quality information, but their overall reliability remains suboptimal. There is a pressing need for higher-quality, trustworthy content, particularly from professional medical organizations, to address this gap.