Victoria Diniz Marisa, Sun Sue Y, Barsottini Claudia, Viggiano Mauricio, Signorini Filho Roney C, Sanches Ozane Pimenta Bruna, Elias Kevin M, Horowitz Neil S, Braga Antonio, Berkowitz Ross S
Obstetrics, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.
Health Informatics, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.
J Med Internet Res. 2018 Sep 24;20(9):e10897. doi: 10.2196/10897.
The term gestational trophoblastic disease (GTD) includes both complete and partial moles, which are uncommon nonviable pregnancies with the potential to evolve into a malignancy known as gestational trophoblastic neoplasia. While highly curable, the potential for malignancy associated with molar pregnancies worries the patients, leading them to seek information on the internet. A Facebook page headed by Brazilian specialized physicians in GTD was created in 2013 to provide online support for GTD patients.
The objective of our study was to describe the netnography of Brazilian patients with GTD on Facebook (FBGTD) and to evaluate whether their experiences differed depending on whether they received care in a Brazilian gestational trophoblastic disease reference center (BRC) or elsewhere.
This was a cross-sectional study using G Suite Google Platform. The members of FBGTD were invited to participate in a survey from March 6 to October 5, 2017, and a netnographic analysis of interactions among the members was performed.
The survey was answered by 356 Brazilian GTD patients: 176 reference center patients (RCP) treated at a BRC and 180 nonreference center patients (NRCP) treated elsewhere. On comparing the groups, we found that RCP felt safer and more confident at the time of diagnosis of GTD (P=.001). RCP were more likely to utilize FBGTD subsequent to a referral by health assistants (P<.001), whereas NRCP more commonly discovered FBGTD through Web searches (P<.001). NRCP had higher educational levels (P=.009) and were more commonly on FBGTD for ≥ 6 months (P=.03). NRCP were more likely to report that doctors did not adequately explain GTD at diagnosis (P=.007), had more doubts about GTD treatment (P=.01), and were less likely to use hormonal contraception (P<.001). Overall, 89% (317/356) patients accessed the internet preferentially from home and using mobile phones, and 98% (349/354) patients declared that they felt safe reading the recommendations posted by FBGTD physicians.
This netnographic analysis of GTD patients on FBGTD shows that an Web-based doctor-patient relationship can supplement the care for women with GTD. This resource is particularly valuable for women being cared for outside of established reference centers.
妊娠滋养细胞疾病(GTD)一词包括完全性和部分性葡萄胎,它们是罕见的不可行妊娠,有可能发展为一种称为妊娠滋养细胞肿瘤的恶性肿瘤。虽然治愈率很高,但与葡萄胎妊娠相关的恶性肿瘤风险让患者担忧,促使他们在互联网上寻求信息。一个由巴西GTD专科医生创建的脸书页面于2013年设立,旨在为GTD患者提供在线支持。
我们研究的目的是描述巴西GTD患者在脸书上的网络志(FBGTD),并评估他们的经历是否因在巴西妊娠滋养细胞疾病参考中心(BRC)或其他地方接受治疗而有所不同。
这是一项使用G Suite谷歌平台的横断面研究。2017年3月6日至10月5日,邀请FBGTD的成员参与一项调查,并对成员之间的互动进行网络志分析。
356名巴西GTD患者回答了调查:176名在BRC接受治疗的参考中心患者(RCP)和180名在其他地方接受治疗的非参考中心患者(NRCP)。比较两组时,我们发现RCP在GTD诊断时感觉更安全、更自信(P = 0.001)。RCP在健康助理转诊后更有可能使用FBGTD(P < 0.001),而NRCP更常通过网络搜索发现FBGTD(P < 0.001)。NRCP的教育水平更高(P = 0.009),在FBGTD上的时间≥6个月的情况更常见(P = 0.03)。NRCP更有可能报告医生在诊断时没有充分解释GTD(P = 0.007),对GTD治疗有更多疑问(P = 0.01),并且使用激素避孕的可能性更小(P < 0.001)。总体而言,89%(317/356)的患者优先在家中使用手机访问互联网,98%(349/354)的患者表示阅读FBGTD医生发布的建议时感到安全。
对FBGTD上GTD患者的这项网络志分析表明,基于网络的医患关系可以补充对GTD女性的护理。这一资源对在既定参考中心之外接受护理的女性特别有价值。