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.

摘要

镰状细胞病 (SCD) 患者的医疗需求很复杂。SCD 患者会出现并发症，例如反复发作的疼痛和住院次数增加。超过 70% 的 AYA 和他们的父母从互联网上寻找医疗信息；83% 的人在具有互动/社交功能的网站上查询，例如 Facebook 或 Twitter，但准确性仍不清楚。我们的目标是评估社交媒体上发布的 SCD 信息的准确性。我们假设大多数发布的信息都是不准确的。我们对来自两个常见 SCD Facebook 群组（Sickle Cell Warriors Unity 和 Sickle Cell Anemia）的一个月线程进行编码，以确定每个帖子的目的和发布的医疗信息的准确性。在这两个社交媒体网站中，共有 487 个帖子。大多数帖子都是针对社交的（n  = 311, 63.8%)，而其他职位主要关注 SCD 及其管理 ( n  = 173, 35.5%)。在查看医疗帖子时，44.9% 的帖子是准确的，而 55.1% 的帖子包含不准确的信息。我们发现交互式社交媒体上发布的医疗信息中只有不到一半是不准确的。我们的研究结果对患有 SCD 的个人和/或其可能依赖社交媒体收集更多关于他们或他们孩子疾病的信息的看护人提出了潜在的严重影响。我们的数据强调了医疗保健提供者鼓励患者和父母提出任何关于 SCD 的问题的重要性，因为他们可能会咨询提供不准确信息的社交媒体和互联网网站。