Analyzing leukemia content on social media: a comprehensive cross-sectional examination of Instagram and YouTube

Introduction: Leukemia is a hematologic malignancy characterized by the uncontrolled proliferation of abnormal white blood cells. Patients with childhood leukemia may turn to social media for emotional support and information. This study aimed to identify the quality, reliability, understandability, and actionability of posts related to leukemia on YouTube and Instagram. Methods: Apify, a web scraping tool was used to gather relevant posts. The top 100 posts in each hashtag “leukemia,” “childhoodcancer,” “childhoodcancerawareness,” “leukemiaawareness” on Instagram, and the top 60 videos on YouTube for the term “leukemia” were scraped on 24 September 2023, resulting in the collection of 361 Instagram and 58 YouTube videos. All posts and videos in English and related to leukemia were included in the analysis, and thus, a total of 231 Instagram posts and 56 YouTube videos were evaluated, guided by the strengthening the reporting of cohort studies in surgery guidelines and utilized standardized tools [Global Quality Scale (GQS), modified DISCERN, and Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V)]. Data analysis was done in R Studio (4.3.1.); Kruskal–Wallis test was used to determine statistical significance. Results: YouTube videos demonstrated commendable standards with moderate quality and reliability (GQS 3.1, modified DISCERN 2.9, PEMAT-A/V understandability averaged 89%, and actionability averaged 50%). The impact of the uploader type on content quality and reliability was insignificant on both platforms. However, a notable correlation between YouTube video duration and quality scores underscored the potential influence of content length on information presentation. Instagram posts exhibited comparatively lower scores (GQS 2, modified DISCERN 1.8, PEMAT-A/V understandability averaged 56%, and actionability averaged 15%), indicating a need for enhanced content quality. Personal narratives emphasized the significant role of lived experiences in shaping content. Conclusion: Despite high understandability, actionable content, particularly on Instagram, necessitated improvement, revealing a potential gap in disseminating practical information. While personal narratives contributed significantly, lower reliability scores highlighted inherent challenges, underscoring the pivotal role of healthcare provider engagement and content validation.