Ruckenstuhl Paul, Schippinger Michael, Liebmann Paul, Leithner Andreas, Bernhardt Gerwin
Department of Orthopedic Surgery, Medical University Graz, Graz, Austria.
Department of General Surgery, Evangelisches Krankenhaus, Vienna, Austria.
JMIR Cancer. 2016 Aug 25;2(2):e11. doi: 10.2196/cancer.5367.
An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment.
The aim of this study was to analyze and compare Ewing sarcoma patients' and relatives' behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment.
We examined a Facebook group named "Ewing Sarcoma Awareness" that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients' and relatives' answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study.
More than 70% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20% (13/65) of all participants reported that the group affected their choice of treatment and 15% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (P=.003) were found comparing patients' and relatives' results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis.
The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients' care requires further evaluation.
越来越多的患者在网络论坛上发声，以交流健康相关信息。脸书是领先的社交媒体平台，2015年夏天记录的国际日用户超过10亿。脸书拥有活跃的受众群体，并以多种方式被使用，讨论医疗问题就是其中之一。尤因肉瘤主要影响青少年和年轻成年人。此外，这个年龄组中的许多人是脸书的常客。然而，对于这种通过基于网络的平台进行的现代交流方式对尤因肉瘤患者及其社交环境的影响，人们知之甚少。
本研究的目的是分析和比较尤因肉瘤患者及其亲属在脸书上的行为，以得出关于脸书对尤因肉瘤治疗影响的结论。
我们研究了一个名为“尤因肉瘤认知”的脸书群组，该群组用于患者和亲属交流有关尤因肉瘤的信息。使用自行设计的问卷来比较患者和亲属的回答。此外，我们连续6个月分析了该群组中的所有活动（帖子、点赞、主题、链接）。在2227名国际群组成员中，共有65名脸书群组成员（26名患者，39名亲属）参与了我们的研究。
超过70%（46/65）的参与者报告称，他们将“尤因肉瘤认知”群组作为尤因肉瘤信息的来源。在参与者中，89%（58/65）在我们的量表上表示，从有点到非常同意通过该群组与其他患者接触使他们更容易应对诊断。在本研究中，20%（13/65）的参与者报告称该群组影响了他们的治疗选择，15%（10/65）的参与者在选择专科医生时受到了影响。关于脸书群组向其他人的推荐，比较患者和亲属的结果发现存在显著差异（P = 0.003）。在过去6个月中，该群组中的大多数活动涉及命运分享和应对诊断。
脸书群组“尤因肉瘤认知”对群组成员的治疗选择有相关影响。此外，参与者转向该群组以在日常生活中获得心理和情感支持。从医学角度来看，该群组中的一些言论部分存在疑问，这些言论对患者护理的影响需要进一步评估。
