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Cluster headache - The worst possible pain on YouTube
Basit Ali Chaudhry1, Thien Phu Do1,2, Håkan Ashina1,3,4
1Danish Headache Center, Department of Neurology, Rigshospitalet Glostrup, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
Online information about cluster headaches on YouTube is often low quality and unreliable. Even content from healthcare providers needs improvement to ensure patients receive accurate cluster headache information.
Area of Science:
- Neurology
- Medical Informatics
- Health Communication
Background:
- Patients increasingly seek health information online, particularly on video platforms like YouTube.
- Cluster headache patients frequently encounter and question internet-sourced information.
- YouTube's vast reach necessitates an evaluation of the health information it provides.
Purpose of the Study:
- To assess the quality and reliability of cluster headache information available on YouTube.
- To identify the sources and characteristics of cluster headache videos on the platform.
Main Methods:
- A YouTube search for "cluster headache" was performed on January 24, 2022.
- Videos with over 10,000 views were assessed for quality (Global Quality Scale) and reliability (DISCERN).
- Video sources were categorized into healthcare professional/institution, personal experience, and other.
Main Results:
- 134 videos met inclusion criteria; 52% were low quality and 78% were of low reliability.
- Content from healthcare professionals also showed significant room for quality improvement.
- Personal experience videos constituted the largest category (n=52).
Conclusions:
- The quality and reliability of cluster headache information on YouTube require substantial improvement.
- Stakeholders should collaborate to provide more accessible and accurate online health information.
- Enhanced resources are needed to support informed decision-making for cluster headache patients.
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