Abstract
The medical needs of individuals with sickle cell disease (SCD) are complex. Patients with SCD experience complications such as recurrent pain episodes and increased hospitalizations. Over 70% of AYA and their parents seek medical information from the Internet; 83% inquire on sites that have interactive/social features, such as Facebook or Twitter, yet accuracy remains unclear. Our objective was to assess the accuracy of the SCD-information posted on social media. We hypothesized that most of the posted information is inaccurate. We coded one month of threads from two common SCD Facebook groups (Sickle Cell Warriors Unity and Sickle Cell Anemia) to identify the purpose of each post and the accuracy of medical information posted. Amongst both social media sites, there were 487 posts. Most of the posts were directed toward socializations (n = 311, 63.8%), while other posts mainly focused mainly on SCD and its management (n = 173, 35.5%). When looking at the medical posts, 44.9% were accurate, whereas 55.1% of the posts included inaccurate information. We found that less than half of the medical information posted on interactive social media is inaccurate. Our findings raise potentially serious implications for individuals with SCD and/or their caregivers who may rely on social media to gather more information about their or their child’s disease. Our data highlight the importance of health care providers encouraging patients and parents to ask any questions they may have about SCD, given they may consult social media and Internet site that provide inaccurate information.
Original language | English (US) |
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Pages (from-to) | 99-107 |
Number of pages | 9 |
Journal | Pediatric Hematology and Oncology |
Volume | 40 |
Issue number | 2 |
DOIs | |
State | Published - 2023 |
Funding
The authors want to thank the research assistants who worked with us to code the threads from the Facebook groups. This project was partially supported by a grant (K23HL150232, PI: Badawy) from the National Heart, Lung, and Blood Institute of the National Institutes of Health. The support from this grant was only for the protected research time that allowed this author (Sherif M. Badawy) to contribute to this work. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Keywords
- Adolescent and young adult
- Sickle cell disease
- medical accuracy
- social media
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
- Hematology
- Oncology