PC2067: Social Media and Osteogenesis Imperfecta: Is the Information Available in Youtube Tailored to Parents’ Needs?

Background: The use of social networks as a means of communicating health information has become very popular, although the information provided can be unreliable. Rare diseases with highly complex care needs for patients and their families result in great needs for health information. However, studies examining relationships between the availability of material, its reliability, and its ability to meet parental information needs are scarce.

Methods: We performed a retrospective review of 50 educational videos in English/Spanish available on YouTube, which involved evaluation by two independent reviewers. Needs of parents included information on diagnosis, treatment, quality of life, and future outcomes. Scientific content was evaluated by a modified validated DISCERN tool, and production quality was evaluated in terms of the seven elements of digital storytelling.

Results: Most videos had high or fair scores for diagnosis (86%) and treatment (60%) categories. Less than half of videos (40%) had high or fair scores for the quality of scientific content. The remaining categories evaluated did not achieve high or fair scores for any videos.

Conclusion: These results indicate a lack of educational material meeting parents' need for information on the effects of osteogenesis imperfecta on quality of life or outcomes, as well as a need for improvement in the scientific quality of the material. Partnerships between health specialists and stakeholders in the dissemination of information in social media could foster the exchange of competencies for the benefit of viewers.