Gage-Bouchard Elizabeth A, LaValley Susan, Warunek Molli, Beaupin Lynda Kwon, Mollica Michelle
Department of Cancer Prevention and Control, Roswell Park Cancer Institute, Elm & Carlton Streets, Buffalo, NY, 14263, USA.
Department of Family Medicine, The University at Buffalo, Buffalo, NY, USA.
J Cancer Educ. 2018 Dec;33(6):1328-1332. doi: 10.1007/s13187-017-1254-z.
Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.
癌症患者及其护理人员越来越多地将社交媒体作为分享癌症经历、寻求支持以及交流癌症相关信息的平台。然而，对于在社交媒体上交流的癌症相关信息的性质和科学准确性，我们却知之甚少。我们对18个由急性淋巴细胞白血病患儿家长创建的公开Facebook页面上12个月的数据进行了内容分析（共15,852条帖子），并提取了所有以医学为导向的癌症信息交流内容。我们系统地对个人Facebook页面上交流的癌症相关信息的主题进行了编码，两位肿瘤学专家独立评估了每条帖子的科学准确性。在总共15,852条帖子中，有171条包含以医学为导向的癌症信息。交流最频繁的癌症信息类型是与治疗方案和医疗服务使用相关的信息（35%），其次是与副作用和远期效应相关的信息（26%）、药物（16%）、医疗护理策略（13%）、替代和补充疗法（8%）以及其他（2%）。总体而言，所有交流的癌症信息中有67%被认为在医学/科学上是准确的，19%在医学/科学上不准确，14%描述的是未经证实的治疗方式。这些发现凸显了社交媒体作为癌症相关资源的潜在效用，但也表明医疗服务提供者应专注于向患者和护理人员推荐可靠的、基于证据的信息来源。
